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Archive for February, 2012

…I was born on January 24, 2012.

I can:

  • grasp your little finger
  • suck on my fingers
  • bring my hands to my face
  • “brace” my feet

I like:

  • listening to your soft voice
  • feeling secure in my bendy bumper
  • having my hands near my mouth
  • to have my eyes shaded in bright light

I need a break when:

  • I get very red or very pale
  • I straighten my arms or legs tensely
  • my arms or legs are jittery
  • I sneeze, hiccup, or yawn repeatedly
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…I came into the NICU today and there was a sticky note from the OT/PT Developmental Team that had some literature on development and these cute little signs that talk about each of the twins and theirs likes and dislikes.  The OT/PT team has been working with them for the last week or so and they provide this information to help us as parents and our visitors learn how to interact with them.  I photocopied the sheets so I could bring them home and I wanted to share them here as well.

Hello My Name is Colton and I was born on January 24, 2012.

I can:

  • grasp your little finger
  • suck on my pacifier
  • open my eyes in dim light
  • kick my legs

I like:

  • soft voices
  • firm, containing touch
  • to be swaddled
  • dim light

I need a break when:

  • I grimace or cry
  • I close my eyes or look away
  • I splay my fingers
  • I sneeze, hiccup, or yawn repeatedly

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The weekend was a good one for the peanuts!  They had some nice visitors come by and visit them and they each got some cuddle time with Mommy.  One of the visitors was their Nonno (my father) and Keltie held his finger, which was a sweet experience for him.  On Sunday, the night nurse had dressed them in clothes as they’re starting to “test” them in regulating their own body temperatures.  I didn’t get a good picture of Mr. Colton as he was all swaddled up and got a blood transfusion (normal – it’s called anemia of prematurity), but I did get this cute one of Keltie when she went back into her “house” after kangaroo time:

Being cute is exhausting.

Isn’t her outfit just so cute?  And her little feet don’t even reach the monkeys at the bottom haha!  Well, I went in to change her later that day and holy crap…literally.  They usually can be “stimulated” to pee or poop when being wiped and I thought I had that covered by keeping her old diaper underneath her, etc…  Well, I lifted her legs up to wipe and OMG – she shot poop straight out and it got all over me, her outfit, the end of her isolette, and everywhere in between.  I.almost.died.  I was so embarrassed as it took two nurses and me to clean her and everything else up.  Apparently it happens all the time but still – so crazy.  Who knew something so little could have so much force behind those bowels?!  I’m sure it won’t be the last time something like this happens, either…

We did get some information from their 30 day head u/s – still no bleeding!  Everything looks to be progressing well (white matter growth, etc…) and everything looked stable.  There were some calcium deposits noted on Keltie, but in my discussion with the head neonatologist she is not showing any other signs or symptoms so it’s of no concern.  He indicated that this is frequently seen at this point in growth and gestation, but he isn’t worried about it and is beyond pleased with the results.

We also found out that Mr. Colton has an inguinal hernia.  Yes, both Chris and I wondered how the little peanut could get a hernia considering he’s not lifting heavy objects but it’s a rather common thing with premature boys.  Essentially, there is this canal in their abdomen that typically closes in full term babies – so with premature babies it can be open and the intestines basically drop in and out of the canal.  Nothing unusual at all and it will be repaired when he is circumcised, which will be closer to discharge. 

Chris and I have been double kangarooing these last two days – he got Keltie yesterday and I got Colton and then we switched today.  It’s just so nice to snuggle with them.  I had Keltie for almost two hours today!!  They’re still doing well – their oxygen needs have been up just very slightly, but the doctors are all over it and are watching them closely.  It may be from some slight fluid retention, so they may give them Lasix but we shall see.  I just hope they sort through it as it’s really great to have them on the high-flow cannulas.  But, I understand if they have to go back on CPAP for a bit…just hoping that doesn’t end up being the case. 

Their feedings have been going excellent!  They’re up to 28 calories per feeding and are tolerating the full breast milk feeds with the HMF added for calories and extra nutrition.  I’m bringing in 8+oz a day of fresh milk for their feeds as well.  Keltie was 2lbs, 5oz and Colton was 2lbs, 8oz today!  They’re growing so well!

I’ll end this with a funny picture of Colton – I took this yesterday and it looked to me like he was saying “no visitors, please”.  I swear, he needs a Do Not Disturb sign to put out on his isolette!

Please - no autographs. Baby sleeping.

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They don’t know it or understand it, but Mommy did go and get them some presents for their one month birthday yesterday.  Okay, so maybe I used it as a slight excuse to get a few preemie outfits I found on sale at Babies R Us. 🙂  Regardless, I was excited to see them for their one month birthday and Keltie opened her eyes for me!  Finally!  I still don’t know who she looks like – Colton is absolutely 155% Chris but I’m unsure about her…  We shall see as she gets older!

Here are some pictures from yesterday, including the “official” whale watermarked ones thanks to Kim!

I am 1 month old today!

 

Burrito baby.

 

I'm one month old today, too!

 

Mommy says I "have" to look like her...we shall see about that!

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Ugh – it was bound to happen with walking in and out of a hospital on a daily basis for a month but I was hit with some terrible 24 hour bug yesterday that had me down for the count.  Because of also suffering a blocked breast duct this week, my lactation consultant (LC) told me the second I felt sick I should call my OB as it could be mastitis.  I did go for an appointment and was put on antibiotics just in case – but my OB couldn’t exactly say for sure whether it was mastitis or the flu / GI bug since the symptoms are so similar.  Chris was super helpful yesterday and took care of me – of course I was more upset about not being able to see the peanuts for the first time since their birth.  I’m still upset over that – and poor Chris is feeling like crap today.  Oy vey.

In other news, this week has been an excellent week!  On Monday, my Uncle Ricky and Beth came to visit and meet the peanuts for the first time!  Kim also went to breakfast with me and came up to the NICU as well to see the peanuts.  When I walked in, they had switched Colton to the CPAP so it was nice that he progressed well, especially considering they weren’t sure he would do well being off the ventilator.  Chris and I had also managed to ask both godfathers and both godmothers to act as this special role in Colton and Keltie’s lives.  This was something we started seriously discussing right after they were born and we put a lot of thought into the choices over the last few weeks.  Keltie’s godmother and godfather are my SIL Lindsay and my step-dad Ken.  Colton’s godmother and godfather are my cousin Maria and my Uncle Ricky.  We are just so honored to have these four special people take an “official” position in their lives and we are blessed to have them agree to do so.

Tuesday my mom came up to visit and got to touch Keltie for the first time while I was kangarooing with her.  She got to feel her soft, sweet little feet and hold her hand!  Keltie and I had a nice snuggle, too, for almost an hour and a half.  I think she’s starting to like being held a little more – thank goodness!  Colton kept ripping his CPAP off and it was spending more time in his mouth than anything so they switched him over to the high-flow nasal cannula!  What a strong boy!  I couldn’t believe he passed his sister on progressing on breathing support!  Before I left and while Nurse Mary was doing him up for the evening, he opened his eyes for me!!!  He was wide awake for a few minutes – it was amazing!

He's so ridiculously cute - and looks just like Daddy!

 
 
Wednesday was Daddy’s day – he went in to kangaroo with both of the peanuts while I did some things around the house.  Of course I found myself around noon wondering what they were doing, how they were doing, etc…so I ended up heading in for an early afternoon visit before my hair appointment.  Apparently Miss Keltie, or “Kelti-licious” as Nurse Fran calls her, pitched a fit overnight so she was switched to the high-flow nasal cannula as well!!  And so the twin to twin competition already begins… Keltie wasn’t forthcoming with opening her eyes, unfortunately, but here she is in her infamous diva pose:
 

The life of a diva and her binky.

 
 
I also managed to get a video of her doing her best Mad Maggie impression from The Simpsons:
 
 
After my hair appointment, I went back for a night visit with the kiddos and they were doing well.  Keltie had a lot of boogies and the respiratory therapist spent a lot of time cleaning her nose out and she did NOT like that.  Could you blame her?  The poor thing – it was all crusty and red.  They ended up switching the type of nasal prongs to the same type that Colton has – they are a bit skinnier and should hopefully provide less irritation for her.  I helped her nurse and got her settled in and then Colton’s nurse was doing his cluster care so I went over to help her.  After doing his vitals, weight, etc…she asked if I wanted to stand and hold him while she made up his bed!  I was so excited – especially since I didn’t kangaroo them that day!  So, I got to hold my little man for a few minutes – he just LOVES to be held and snuggled.  On my way out, I stopped in to meet my friend Justin’s new baby, Jordan.  I held him and, oh my goodness, what a difference between my 2lb, 2oz Colton and his 9lb Jordan!  Jordan is a jumbo compared to my two peanuts! 
 
Both started their fortified milk feedings on Wednesday with the HMF and they seem to be tolerating it well.  Keltie will be on full feeds by today and Colton is already there – so they should really start showing some growth being on these feeds.  I’m back to bringing in 8oz or so of “fresh” milk a day to the NICU since fresh is better and so they can use it for their feeds.  This means no slacking on the pumping – which is still exhausting and still something I hate but…it’s the best thing for them so I’m sucking it up and trying not to complain too much. 
 
They had their PICC lines removed yesterday, so that’s one less major line in their little bodies and one less foreign object to pose a risk for infection.  They were supposed to have their 30 day head u/s completed yesterday, but it was rescheduled for today so here’s to hoping there’s still no bleeding and that everything looks like it’s progressing normally. 
 
Today is their official one month birthday!!  Yay – happy birthday to my little peanuts!!!!  It’s been both the worst and best month of my life – but with these positive milestones being met and their breathing doing so much better, I’m forever grateful for the quality and level of care they’ve received.  I never knew I could love two things as much as I love Colton and Keltie.  I count down the days until we have them healthy and home with us!

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I apologize for the neglect of the blog this week – it’s just been one of those weeks where a lot of time has been spent with the peanuts at the NICU and I’ve been exhausted by the time I get home.  Oh and all those other responsibilities, too, like cleaning the house, my car, and we even got laundry from the NICU to do for the kiddos!

It’s rather amazing but we are dealing with completely different babies now than even a week ago.  Keltie, as mentioned, is on the CPAP and is doing well with her breathing.  Sometimes she forgets, but for the most part she is tolerating the CPAP well.  They even think she will be transitioned to the high-flow nasal cannula within the next few days.  She continues to be advanced with her feedings and has been tolerating her increasing feeds well!    They will begin supplementing both of their feedings with human milk fortifier (HMF) to provide extra calories and nutrition they need.  I signed a consent form this evening as Colton and Keltie will be the first babies at South Shore Hospital to have HMF!  It has been used before in other hospitals in the region (and country – so this isn’t an experiment!) with fantastic results – the typical risk of Necrotizing Enterocolitis (NEC) is 7% and babies who were fed HMF vs. cow’s milk fortifier only had a 3% showing of NEC and only 1 of those babies needed surgery (and that baby was accidentally provided cow’s milk fortifier so…).  I am excited for them to get the opportunity for the HMF because it truly seems like there are some excellent benefits to it vs. the cow’s milk fortifier.  Benefits such as easier digestion, in addition to the reduction in risk of NEC. 

Colton was transitioned on Friday to nasal intermittent positive pressure ventilation (NIPPV), which is a version of the CPAP that is an in between device used to get babies off of intubated ventilation and onto a less invasive method of breathing support.  The difference between what Keltie is on and what Colton is on is that Keltie is expected to remember to take breaths on her own whereas Colton’s device provides him with a specific number of breaths each minute – both are still receiving low levels (21-40%) of oxygen support as well.  Colton is also advancing on his feeds and tolerating them well – although he spits up a bit if he gets agitated after he eats, but no one seems to be worried about it.  What kills me now is you can hear him cry – and it absolutely BREAKS.  MY.  HEART.  He seems to cry more often than his sister and when it happens, I just melt.  When he cries and I’m there, I do everything in my power to fix whatever it is that may be bugging him.  Seriously, the boy has me wrapped around his tiny tiny hand…and I’m sure the nurses don’t appreciate me running over to him at every wimper!

We’re starting to become more involved in their care and this is allowing us to learn more about the peanuts.  We take their temperatures, change their diapers, and we have been holding them both daily with the kangaroo care.  Colton LOVES his kangaroo care time and seems to really enjoy being close to mommy and daddy.  Keltie…is another story.  She’s a bit harder to settle and we’ve had some good times and bad times with the kangaroo care with her.  But, if you’re able to keep her CPAP mask on while you hold her and keep her settled, she does very well.  I held her today and it was probably the best she has had in the handful of times we have done it. 

Colton loves to be swaddled like a burrito – and apparently last night he somehow managed to pull his swaddle over his face and he settled in like this, happy as a clam!  I laughed when the nurse told me this and said we have to get him a Do Not Disturb sign!  I had received an early shower gift before my original shower date and it contained a package of muslin swaddle blankets from Aden & Anais.  So, I washed them and brought them in once I saw how much he liked to be swaddled and he is absolutely in love with these swaddle blankets!  They’re light enough that he doesn’t get too hot and they’re so so so soft.  Of course they’re made for normal sized babies so they’re huge, but the nurses make do. 

Keltie is still undecided on the swaddle concept – some days she’s interested and other days she’s doing all she can to bust out of it.  What she does love is her binky!  She looks like Maggie from The Simpsons sucking on the smallest binky you will ever see!  I used a trick I learned from Julie and put her hand in front of the binky to hold it in and that works for about 20-30 minutes and lord help us all when it comes out!  She is NOT a happy lady when that happens!  But it helps soothe her and it is also great for helping her continue to remember to breathe – sucking and breathing at the same time is quite the concept for these little ones and she seems to do it pretty well for the most part. 

I’ll end with a FAQ that I’ve received quite a bit this last week and I thought it would be helpful to discuss –

Q:  Are they gaining weight?

A:  So, the answer to this question should be a simple “yes” or “no”, but it’s not and here’s the scoop – back in the day preemies were considered premature if they weighed less than 5 lbs at birth.  So, most people associate prematurity with weight and if they’re gaining weight they’re getting better.  And almost everyone thinks that the babies have to meet a certain weight in order to go home – well, that’s not the case any more.  Prematurity is now based on gestational age – any baby born prior to 37 weeks gestation is considered “premature” and there are various levels of prematurity based on their gestational age.  Also, weight has little to do with whether they can come home or not.  Instead, they have to meet certain milestones (and sustain them) in order to be released from the hospital and those are milestones like suck / swallow / breathe at the same time, taking 100% of feedings, and sustained growth.  You can potentially bring home a baby that is less than 4 lbs if he / she meets the milestones!

Since our babies were born, the doctors have been primarily focused on their breathing issues and resolving them.  It’s not to say they weren’t tracking or reviewing their weights, but since their primary source of nutrition was in IV fluid form, their weights could fluctuate by 50-90 grams each day depending on their fluid retention.  Now that in this last week or so they’ve made some significant progress on their breathing, which has allowed for them to come off of the blood pressure medicine and much of their sedation, which then allowed them to restart their trophic feeds, and finally increasing their feeds of breast milk to more than half of their total nutrition – the doctors will be looking much closer to their weights and growth overall.  There is a nutritionist in the NICU who plots their length, weight, and head circumference and works with the doctors to discuss their nutritional needs.  I’ve seen Keltie’s plotted results and she is hovering in the 10th percentile based on gestational age (not actual age).  I haven’t looked at Colton’s yet. 

So, that is the long answer to the “easy” question about their weight gain.  To answer it in short form, yes they’ve gained weight.  Keltie is around 1 lb, 14 oz and Colton is around 2 lbs, 2 oz right now.  And they’re just getting started with their growing!  Can’t wait for them to be big and strong!

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With all of the excitement surrounding our first kangaroo holds of Keltie and Colton, I fell a day or so behind in the normal updates.  Let’s recap what has been a really, really good week!

Monday we got a rare good news call from the NICU – Colton was switched to the conventional ventilator as well!  This was so awesome to hear and I was pleased to know that he was making strides after starting the steroids as well.  When we went in to visit them, it was so quiet – I didn’t realize how loud the high frequency ventilators were!  I had to laugh when we peeked into Keltie’s isolette and saw her practicing some “sign language”:

Freshy fresh.

We took a Developmental class prior to me kangarooing with Keltie and it was really interesting to learn the different “stress cues” for preemies and babies in general and what we can do to try and reduce their stress and positively impact their development and growth.  Things like hiccups, stiff hands (like  “talk to the hand”), stiff legs, pale faces / knuckles, and gaze aversion. It is nice that the staff offers these type of classes as we would otherwise be clueless.  Well, I mean, we’re still clueless but at least we’re trying to learn!  Clearly kangarooing Keltie was the most amazing experience we had on Monday – she was just so sweet!

Tuesday was Valentine’s Day, so Chris and I started a puzzle – we’re super romantic like that… 😉  After giving up on the puzzle for a while, we headed up to the NICU for our visit and so he could kangaroo Keltie for the first time.  When we walked in, we were greeted by valentine’s that the staff at the NICU made for us from our kids, including pictures.  Too darn cute – I’ll have to scan them and post them.  But our biggest surprise was to find Keltie on the CPAP machine!  We almost died!  She was doing so well on her ventilator that they switched her over to the CPAP!  I must admit, though, that she wasn’t liking the CPAP too much – especially the little nozzles in her nose.  And…this didn’t lend to an amazingly graceful first time kangarooing experience for Chris.  But, we made it through it and he was finally able to hold his baby girl!

Aww, Daddy's baby girl.

Her mask kind of hides her beautiful face - but we know it's there!

After our visit, we did celebrate Valentine’s Day by going out for dinner at Ayoyama where we spent most of the time talking about the kids.  We’re such parents now…

Today after breakfast with my wonderful friend Lynne, I headed up to the NICU so I could finally kangaroo with Colton.  It was such a sweet experience to hold my little boy – I am honestly just head over heels in love with these two peanuts.  And I’m so glad it was Nurse Fran that was there for my first kangaroo with Keltie and Nurse Mary for my first with Colton – they have quickly become our favorites for our kids and they already mean so much to us.  Chris had an appointment, but was able to catch the last 10 minutes of my kangaroo time with Colton, which was great. 

They switched Keltie’s CPAP mask last night to one that is more of a triangle cap on her nose and she seems to be tolerating it better.  When I came in, she was on her side and kicking her legs a little.  It reminded me of a syncronized swimmer!

All she needs is a cap with a bunch of flowers on it!

 
 
Chris was a trooper and agreed to try kangarooing again with Keltie – we were hopeful it would go better with the new mask and it did. 
 

Second time is the charm!

 
They both did very well and when they placed her back in the isolette, she was very relaxed and calm.
 
It has been a really good couple of days – and I’m almost (okay, really) afraid to say that.  I did overhear the head neonatologist giving report to the one who is on duty this evening and he made mention that the steroids have really made these two completely different babies than a week ago.  It almost seemed like he was surprised as to how well they are working for them.  I know I was super scared about the long term effects (and still am), but to see what they’ve been able to do has renewed my faith in modern medicine.  We just need those positive thoughts and prayers to continue to ensure that this progress keeps going and that there are no long term effects from the treatments!

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