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Archive for August, 2012

Mommy is dealing with a house full of yuck.  Daddy is down and out with some sort of summer flu and the twinfants were taken to the pedi yesterday and confirmed to have summer colds.  And Mommy woke up this morning with a head full of yuck and a sore throat.  Fun times around here!  Hearing my snotty nosed little babies cough like the dickens and sneeze like crazy truly hurts my heart.  It’s not like they understand how to blow their nose and all you can really do is keep them elevated and saline their nose.  It also started my head spinning even more about the upcoming winter months and the big, scary threat of RSV.

What is RSV?  Well, I happen to have some information to share about it and I hope it also sheds light into how we will be handling the twins and visits starting in October.

RSV stands for respiratory syncytial virus and if you’ve never heard of it you are not alone.  You see, RSV is essentially the common cold.  Most children have actually had it by the age of 2 and suffer no more than anyone else with a cold.  Unfortunately, for preemies it means a lot more.  Preemies are at the highest risk for severe complications such as pneumonia, bronchiolitis, and other sometimes fatal complications.  Colton and Keltie were born premature, had low birth weights, and are twins which put them in an even more elevated risk group for contracting RSV and suffering severe complications.  Here is a good comparison example of a full term baby’s lungs vs. a preemie baby’s lungs:

If lungs were trees…full term baby on the left and preemie baby on the right.

“When children are born prematurely (before 36 weeks of gestation), their organs are not as prepared as those of full term children to handle functioning in the outside world. As a result, the most important bodily functions become circulation, breathing air effectively and efficiently, and carrying oxygen to the organs.

Premature birth interrupts the final stages of normal lung development. If lungs were to be represented as an upside-down tree, the lungs of a full-term baby would be fully branched with many leaves. The lungs of a premature baby would look like a simple tree or sapling and would be very rudimentary, with only a few branches and leaves. Since the body counts on those branches to breathe, a simple tree cannot function as well as a fully developed tree.

The illustration graphically shows how the lungs of a premature baby differ from a full-term infant and why a disease such as Respiratory Syncytial Virus (RSV) can be so serious. A premature baby’s lungs are underdeveloped and cannot fight an infection such as RSV as well as a full-term baby’s can.”

– Alan Cohen, MD, FAAP, FCCP – Pediatric Pulmonologist

RSV season in our area typically runs October through April.  During that time, we will be taking extra precautions to ensure we protect Colton and Keltie as much as possible.  When we took them each home from the hospital, we promised them we would do all we could and sacrifice whatever is necessary to ensure they never have to go back.  As you can imagine, we take this promise very seriously as we feel their 100 and 142 day stays were enough for one lifetime. 

How is RSV spread?  It is passed through physical contact, airborne through a cough or sneeze, or by touching an infected object.  Colton and Keltie are in the stage of putting anything and everything in their mouth, so that last part is critical.  The virus can live up to six hours on your hands and up to twelve hours on objects!

Some of you may come from the stance of “if they get sick, it helps build immunity” but in our case that is not what we want.  Because they were born premature, they lack some of the strength in their immune system to fight off illnesses like a full term baby could.  As mentioned above, to you or me or even someone else’s full term baby – this is simply a cold.  But to Colton and Keltie, it could mean a readmission to the hospital or even something worse. 

Unfortunately, we will not be attending many events as a family during the RSV season this year (holidays will likely be our exceptions).  Because of their breathing issues early on, our pediatrician has indicated that their lungs remain fragile up until two years of age (adjusted).  We will also ask that all visitors follow similar precautions that they were so kind to do when visiting Colton and Keltie in the NICU such as:

1 – When you arrive, please wash your hands and use hand sanitizer provided prior to handling the babies.

2 – For those who visit or handle them often, we are asking that your strongly consider getting both the flu and Tdap shots.  Pertussis is another huge concern for us and with the ill-informed anti-vaccine movement, it is reaching epidemic levels in some areas.

3 – Please refrain from visiting if you are currently sick and have not been symptom-free for at least 5 days, if you live with someone who is sick, and / or have been in close contact with someone who is sick.

4 – If you smoke, we ask that you change your clothing and refrain from smoking prior to visiting.

5 – If you are parents to a baby or toddler, please refrain from bringing them to our house during RSV season.

We hope this helps explain RSV and our winter worries.  Here are additional resources on RSV:

RSV Tracking System:  Find up-to-date information from the Centers for Disease Control (CDC) about RSV outbreaks by state, region, or the entire US.

RSV FAQs

We strongly encourage visitors and outings through the end of September, so please let us know if you’d like to make plans to see us! 

Coming up next – our 7 month birthday and some new milestones and health updates!!!

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Many readers of this blog have found it because they, too, have been affected either directly or indirectly with prematurity.  My favorite quote I saw on a t-shirt at the March for Babies was, “Everyone knows someone who loves a preemie”.  How true is that?! 

I’m lucky to have an amazing support system of about 60 moms who have preemies.  These moms have had preemies of various gestations, medical issues, NICU durations, and sometimes even more than one preemie child.  They are one of my greatest support systems and I am so blessed to have them at my finger tips (and thank the All Knowing Julie for inviting me in)!  They also pay it forward outside of our private inner circle – and they do this through a blog called Preemie Resources.  They have also created a FB page to allow for more information to flow to others in need of support, answers, or just to be there for others who constantly struggle through this experience and those celebrating milestones of their own.  Please visit both and Like the FB page for more information!

I was happy to write an article for the blog on Premature Rupture of Membranes (PROM) and Preterm Premature Rupture of Membrances (pPROM), which as you all know is what got us a one-way ticket to Preemieville.  I was able to incorporate some of our story into the article and hope that it allows others to learn more about the leading cause of preterm deliveries

Check it out!

http://preemiemomblog.blogspot.com/2012/08/premature-rupture-of-membranes.html

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Master Colton, or Coltonpants as we call you around here (no, I don’t know where it came from, especially considering the majority of the time you’re not wearing much more than your diaper)…  You’ve been home for about 60 days and you’ve brought a whole new level of crazy to this house!  In a good way, of course.  After having just your sister here for six weeks, you really shook up the place.  But it’s been awesome – there is no other word to describe it except awesome.  Both of our babies, under one roof, and we don’t even have to shower or get out of our pajamas to see you!  Mommy knows where your allegiance lies, too – and we’ll keep your preference for Mommy our little secret… 😉  You have such a serious look to you most of the time, but I think it’s because you’re a thinker and you’re taking everything in.  Also, you know how to play the game.  Don’t give us an overabundance of smiles or laughs because then we will get saturated – dole them out occasionally and it brings you more attention and accolades.  I’m onto you, little man.  You devious little dude…  Let’s tell the peanut fans about the HUGE strides you’ve made since busting out of the hospital, okay?

Birth, 1 Month, 3 Months, 6 Months

Health

Colton is currently 13lbs (seriously) and 22 1/2″ long – a change from the 1lb, 13oz and 13″ long he was at birth.  He maintains about a 2lb advantage over his sister and man – is he a STRONG baby.  It’s like nothing I’ve ever experience – 13lbs of pure strength.  He is eating 6oz (seriously) of Elecare thickened with SimplyThick every 3 hours and is growing steadily.  He, like his sister, is sleeping through the night – usually from around 9:30 / 10:00pm until 6:30/7:00am and it is AWESOME.  It’s amazing how sleep can make for a happier Mommy and Daddy!  Three weeks ago we got the green light to send the oxygen machine and canisters packing along with the Sp02 monitor.  What a glorious day that was!!!  We only used the blow by twice in the first week he was home (and maybe a few times to help wake up Mommy and Daddy haha).  The monitor was more annoying than helpful so once we were comfortable, we switched him to the Snuza Halo like we use with Keltie and turned the monitor off.  Colton did come down with a virus the first week he was home – and I’m 99.99% positive I gave it to him.  I got pretty sick the first few days he was home and then he spiked a fever but we were able to break it and aside from pooping on me and the NP at the pediatrician’s office (gross, awful, large quantities haha), we escaped unharmed.  He also had a tough reaction to his 6 month vaccines with a pretty high fever but infant Tylenol helped and he was back to himself within 24-48 hours.  Colton’s ROP has regressed (yay!) but his vessels are slow to grow in the eye that wasn’t treated with the laser surgery.  His ophthalmologist isn’t concerned but will be seeing him again in October to check on the growth.  Hopefully by then he will be cleared and he will join Keltie on an annual basis.  This week we brought him for a surgical consult – prior to leaving the NICU, he had hernias that would come and go.  So this was a follow-up to see if he needed bilateral repairs (like Keltie had) and the hernias were not there so he is all set!  We will, however, have him circumcised in December (Merry Christmas, Colton!!  Ugh…) and that will take care of that as long as his hydroceles resolve which they already look a lot better.  Tomorrow we have a GI appointment and I’m going to ask about his delayed emptying and possibly trying a new Prilosec-like medicine that is out called First Omperazole.  Unfortunately, the swallow study he has on the 28th doesn’t coordinate with GI so it’s all separate.  Kind of annoying but it is what it is.  We are so hoping he has matured his swallow and has no more aspiration of thin liquids, so keep your fingers crossed for good news on the 28th!  I know it sounds like a lot going on with the big strong guy but it really isn’t – he is really healthy, tolerating his severe reflux really well (he learned to clear his throat) and is a completely different baby than what we took home.  No real arching in pain (he arches when he’s pissed), no reflux attacks while he sleeps, and you can tell he is generally more comfortable and happy.  Although very serious, deep down he’s happy!

Development

Hanging out in my bouncy seat!

Colton is doing awesome on his developmental milestones!  He sits up well on his arms and holds his head up for longer periods of time.  He thoroughly enjoys admiring himself in his mirrors and has been moving / kicking his legs to try to get somewhere.  If only he realized he has to move his arms, too!  He is doing well in his rolling attempts but tries to use his back muscles more than his core muscles to roll, but I’m sure that will come really soon.  He tracks his toys well and does awesome at reaching for, shaking, and “playing” with them.  His most favorite toy is his O Ball rattle – he flips over it!  He spits up a lot for long periods after he eats, so it can get messy doing tummy time, but we also play with him while he’s in the Bumbo or his bouncy seat and he loves laying under his musical gym and watching the lights and reaching for the toys.  We continue to work on his rolling with less arching / use of his back and sitting up unassisted.

Personality

Hanging out and kicking!

As we have established, he is a bit Mr. Serious but I’m sure some of that is the fact that he is refluxing all day long.  He truly is happy and gives the best coy, shy smile and a great giggle.  He loves to kick, kick, kick in the morning and really enjoys playing with his toys.  As we established in the NICU, he loves swinging in his swing, too.  One new thing we’ve found is his interest in the TV.  He enjoys watching SportsCenter with Daddy and even settled down and watched Ice Pilots after having a bit of a fit the other night.  He absolutely loves the outdoors and has enjoyed visits to the beach and swimming in the pool.  Swimming just may be one of his favorite things! 

I can’t get over the difference in Colton – you can just see he is feeling so much better.  I think, although he still spits up in large quantities all.day.long, he is learning to manage it better and is, in return, a happier boy.  I wish you could tell his strength through the photos – he is SUCH a strong boy.  Pretty soon he’ll be bulldozing his sister and stealing all her toys!  Colton and I shared a lot of late night talks when he first came home and we still have our deep conversations about life, toys, bottles, binkies, and why he feels the need to poop right after I’ve changed his diaper.  I love his babbles and look forward to his (messy) snuggles.  He’s Mommy’s man.

Collage of Colton over the last 6 months

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Oh Miss Keltie – my have you grown!  It has been 6 months, 3 weeks, and 2 days since you decided that you truly wanted OUT.  I think I remind you of that fact on a daily basis and I am so thankful that I *can* remind you of that fact on a daily basis.  I took some time to look through all 800+ pictures I have of you and your brother that were taken over the last six months and I must admit, it has been the longest and shortest six months of our lives.  You’ve put us through the ringer but oh man is it ever worth it!  You already know how to work it – with that ridiculously huge and gummy smile, you can essentially get anything you want.  I wonder if you know that yet?  Probably.  We’re screwed…  Anyways, let’s do a little rundown of how you’ve been lately!

Birth, 1 Month, 3 Months, 6 Months

Health

Keltie is currently 11lbs and about 22″ long – that’s quite the difference in almost 7 months and from starting at 1 lbs, 9oz and 13″ long. She has been doing really well and is growing at a good rate.  She is eating 4.5oz of Neosure formula every 3 hours and is tolerating her vitamins and medicine each day.  She has her blood pressures taken weekly, but will be moved to every other week after her appointment with her renal specialist next week.  Her blood pressure has been stable so it looks as though the nephrocalcinosis isn’t affecting her much and she’s outgrowing it.  She graduated from the ophthalmologist as well!!  Her ROP has totally resolved and her vessels have grown in well in both eyes.  We are so happy she avoided the laser eye surgery!  Since coming home she truly has flourished and has been a healthy little girl.

Development

Hanging in my Bumbo

Early Intervention has been coming for the last two months and we have seen great strides in Keltie’s development.  Their developmental specialist, Sheila, has done a lot of work with them and we continue to work on the skills she targets each week.  Keltie currently tracks her toys and people well and is doing great reaching for and batting at toys.  Her tummy time skills did leave a lot to be desired, but with dedication from Mommy and Daddy (and the help of using her Bumbo under close supervision), she is finally pushing up on her arms and holding her head really well.  And, on Wednesday, Miss Keltie rolled from back to tummy!!!  We were SO excited!  We continue to work on head / neck control, rolling, and are now working on sitting up unassisted. 

Personality

Smiling is my favorite!

Keltie is a hambone.  As soon as she figured out smiling, she decided that was her most favorite thing to do!!  She smiles all the time, most of the day, and even has worked in a really cute laugh!  She likes laughing at peek-a-boo and other silly things Mommy and Daddy do for her.  She is such an “easy” baby – she is pretty laid back and likes to just take it all in.  Keltie’s second favorite thing to do is cuddle.  In fact, I had been trying to work on this entry while she has been laying on my left shoulder asleep and it didn’t make for a comfortable typing position…but she’s worth it so I waited until Daddy took her to bed to start.  She is learning her voice and doing a lot of cooing and shreeking!  It’s simply amazing to see her coming into her own little self.  I laugh and cry every time she laughs – it amazes me.

Overall, she is doing awesome and is a great little girl.  We are so blessed to wake up to her each day, to be showered in her smiles, and consumed by her cuddles.  She is perfect. 

Collage of Keltie over the last 6 Months

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Wow – this has been seriously neglected and I don’t even know where to start.  I will do a general update and then post separate updates on Colton and Keltie either tonight or tomorrow. 

Last Tuesday was Colton and Keltie’s half birthday! 

 

They are doing so well and it was so nice to have a birthday with them both home.  I still can’t believe it has been six months – it has felt like the longest and shortest six months of our lives.  Having them home has truly transformed our life – but in such a great way.  My tan is not nearly as dark as it usually is this time of year, I am using a lot of consealer to cover the dark circles, and I’ve only been to the beach once – but to play with them every day and see the smiles on their faces is something I cherish more than sleeping in on the weekends and toes in the sand.  We have enjoyed bringing them out and about to family and friends and having others enjoy meeting them and seeing their beautiful faces. 

The dogs have adjusted well to having two babies in the house.  Lucy is more motherly and will sit near them and will be around during feedings in their nursery.  Cooper couldn’t be bothered – in fact, I’ve put one of the babies near him a few times and he high tails it out of the room!  But, it’s better than being aggressive and so our family of six is doing just fine living under one roof!

We have managed to get a decent routine down with them – eat, play, sleep every three hours.  We do try and keep them awake for the few hours prior to their last feeding (which is around 10:00pm) so they will sleep better at night.  Keltie is the sleeper – she loves sleeping (and smiling!  Smiling is her favorite!) whereas her brother is hit or miss.  Sometimes the little chunka will get hungry and wake around 5:00am and other times he’ll sleep until 7:00 or 8:00am.  It’s amazing how much better you feel with just a little more sleep!  The first few weeks with Colton home was rough.  We were walking zombies.

We did manage to survive Chris’s shoulder / collarbone injury.  He was out of commission for quite some time, but was able to help with Keltie since she is lighter and less…work.  Colton is a bit more…work.  But we love him just the way he is!!  Okay, maybe we’d love him slightly more if he didn’t spit up all over everything all.the.time.  😉  Chris went back to work about two weeks ago and I returned around the same time as well.  That was hard for both of us – but it is what it is.  I can honestly say that work is a LOT easier than being a FT mom!  I give SAHMs a ton of credit for all they do!  I did have a hard time accepting that I didn’t get a “normal” maternity leave or a full 12 weeks to stay with the babies and bond with them at home.  Just another “loss” that I have had to work through internally.  I am forever grateful, though, that I was able to take what I did and enjoyed spending days taking walks along the Cape Cod Canal as a family, dipping them in the pool for the first, second, and third time, their first July 4th, and fun evenings playing at home.  We also had a lot of doctors appointments and those, thankfully, have slowed down. 

Overall, it’s been busy to say the least but we love it.  It’s chaotic, but rewarding.  My love for them grows every day – every second of every day.  To look at the progress they have made is astonishing to me – and to know Chris and I made these beautiful beings is simply amazing.  They are the strongest little people in the world – just to reflect on what they went through to get to where they are today bring tears to our eyes.  And we still treasure every milestone they have, both big and small.  I don’t think that will ever wear off.

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