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It’s that time of year again!  We are working on building our 2013 March for Babies team that honors Colton and Keltie and helps provide money towards research that helps other babies like them.  Their team, Half Baked Crusaders, was small but mighty last year and we are hoping to make it even bigger and better!

Last year, they were itty bitty.  Colton was just released from the NICU after 142 days.  We had to bring his SpO2 monitor and portable oxygen with us just in case he had a spell.  Those days seem like so long ago as we see him now big, strong, and mobile!  I also got to kick off the March for Babies efforts with my employer, Sears Holdings Corporation, by telling our story and inspiring all of the associates at Kmart to ask our customers for donations.  It was an honor and something I was proud to do.

So – what are you doing on Sunday, June 23rd?  Please consider joining our team and walking with us along the beautiful Cape Cod Canal in support of the March for Babies.  You can easily join our team by visiting the team website:  http://www.marchforbabies.org/team/t1947387

If you don’t live near us and can’t walk, please consider donating to our team through the website shown above.  All of your donations are tax deductible.  Honor Colton and Keltie and all they have overcome to be the thriving little people that they are today by donating to a cause that will forever be important to them and our family.  If you own or know someone who owns a business in the South Shore of MA or Cape Cod area – please contact me about being a family team sponsor and the advertising opportunities that come with donations of $100, $250 $500, $750, or $1000.  These family team sponsor donations help our team reach our goals, as well as helping to promote your business locally. Each sponsorship will receive a 18×24” sign to display along the walk- with your business name, level of sponsorship, and our Family Team name.  A great way to support a great cause- and get some advertising around the community!

Please consider supporting Half Baked Crusaders – and we’d love to have our local friends and family join us on Sunday, June 23rd!

2012 Half Baked Crusaders Team!

2012 Half Baked Crusaders Team!

Mother's Day Kmart

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November is prematurity awareness month and although I have always supported the March of Dimes, it hits closer to home this year because of my two special fighters.  On November 17th, World Prematurity Day, we wore purple to honor the preemies still in the NICU fighting for their lives, those that have lost their battle, and those that are home – once tiny, always strong.  We also went with the March of Dimes to South Shore Hospital to bring the NICU baskets of items to help other babies in need.  Our family contribution was eight of our ever favorite Aden & Anais swaddle blankets with the hope that the nurses will snuggle some of the current itty bitties in those soft swaddles instead of the sometimes stiff and rough hospital blankets.  Colton and Keltie had an arsenal of those swaddles and their nurses loved them – so it was nice to give back to the place they called home for 100 and 142 days.

We were lucky to see some familiar faces – a few nurses we knew and one of our favorite doctors.  He held Keltie and she smiled and giggled at him – I have to think that made his day.  Walking out, I teared up.  It was the first time I walked both of my former 26 weekers out of that hospital, healthy and enjoying life outside of those walls.  It warmed my heart to give back to the special nurses, doctors, and staff of their NICU as they will always be considered extended family members of ours.  It was even better to have one of their primary nurses, Fran, come to the house to visit the following day.  Having these people remain in our life is so important to me – and I know it will be important to Colton and Keltie in the future.

Just as important to giving back to their NICU is spreading awareness.  My lovely preemie mom friend, Joanna, has an excellent blog about her twin boys who are also preemies.  She dedicated blog entries for the month of November to sharing stories of all their preemie friends.  You see – there is a group of about 60 of us who are in this “sisterhood” because of the common bond of having experienced life with a preemie.  These women, I’ve mentioned before, are some of the strongest, most incredible women that I’ve ever met.  Two of them came to my house to help me when Colton came home – they had only known me through our online group, yet they sacrificed their time to help a preemie mom in need.  We lift each other up in support during the downs and we cheer and applaud all of the ups.  We also overshare and may even be a bit crass.  But they’re amazing – I wouldn’t want to walk this life without their love and support. 

So – check out the highlight on Colton and Keltie and some of the other stories on Joanna’s blog, including her own.  You’ll find some pretty special kiddos and some pretty amazing mamas!

http://hydrobabies.blogspot.com/2012/11/aware-meet-my-preemies-colton-keltie.html

And remember – everyone knows someone who loves a preemie.  Spread the awareness – 1 in 8 babies are born premature in this world.  That is a ratio that is far, far too high.

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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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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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I’ve been neglecting the blog – but I’ve been eating up these two as much as possible before going back to work next week.  I brought my laptop in today and so I’m officially blogging from the NICU, with Colton on my chest kangarooing!  How high tech and multi-tasking, eh?!

Let’s see – the end of last week and the weekend was pretty good.  The peanuts got new condos in a new location in the NICU – they’re in the “pod” which was a bit of a graduation for them, so we were excited!  They’re out of the Giraffe isolettes and into “regular” isolettes, so they’re mostly working on weaning off their high-flow nasal cannulas and oxygen support and trying to grow, grow, grow!  The new space is a bit smaller with no natural light – which we don’t like.  BUT, we were able to finally reunite the peanuts and hold them both at once!

We had some nice visitors over the weekend as well – both sets of grandparents, Auntie Lindsay, and some honorable Aunties all came to see the porkchop and lambchop.  Much to my surprise, Sunday night Daddy put together the cribs and I came home to find the nursery coming along nicely!

From a health perspective, both babies are doing well.  And the big news is – we have two 3 pounders!!  As of today, they are both 3lbs, 2oz!  What an awesome milestone for them each to reach – we are just so excited!  They are doing well with their breathing – both were weaned down on their flow, but today they were put back up to 3L as they were working really hard to maintain the lower flows.  Just a minor set-back, so they want them to just focus on their awesome growth and they’ll try to wean them again on Monday.  Keltie’s blood pressure is finally under control – they found the magic dose of her medicine and she’s had BPs within the normal range since Sunday.  It’s likely she’ll be on the BP meds for a while since the clots take some time to break down.  Keltie has been showing signs of wanting to feed by mouth – that is really exciting and I believe they’re planning to try that starting next week.  Colton hasn’t shown as many signs, but I’m sure he’ll learn quickly.  Clearly we have genius babies… 😉

And, in case you didn’t get enough of the amazing photos Candace took and previewed for us – you can see all 35 wonderful shots by clicking this link and using the password “allantwins”:
http://prints.candaceschwabphotography.com/Births/Allan-Twins

She completely captured the beauty of these precious miracles and gave us a gift no one else could.  For that I am forever grateful!!!

And I’ll end it with another FAQ –

Q:  When will they be able to go home? 

A:  We’ve had this asked quite a bit lately, probably because it’s been 7+weeks and they are doing pretty well growing and with their breathing.  Unfortunately, we still have quite a road ahead of us.  The doctors have always said to target around your due date, which for me was April 30th.  So, we expect them to be home with us by early May – which seems like forever away.  But, we’ve “survived” 50 days, so what’s another 50?  I believe I may have mentioned this in another entry but they have to meet at least the following milestones to be released:

– No spells (brady cardias / apnea)

– Take all feedings by mouth (and the entire amount)

– Consistent growth (not a specific weight)

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The remainder of last week was stable for Colton and Keltie.  Both Chris and I switched off kangarooing each of them and it was nice to have snuggle time.  They continued to do well with their feedings and their breathing was stable on the high-flow cannulas. 

On Friday, we had our first night out in the city with some friends who were in from out of town.  This was also Mommy’s first night with her long lost friend, wine, since July!  It was nice to enjoy a few adult beverages and socialize with some fantastic friends, but I must admit that coming home and pumping 4 ounces and pouring them down the drain was SO HARD.  It’s a lot of work pumping every 2-3 hours – it’s become like a part-time job!  So seeing that valuable milk go down the drain was tough, but worth it.  I just had to remind myself that 4 ounces is a very small drop in the bucket when we have a freezer full of milk.  And – I deserve a little me time, right?  Mmmmm, wine…it was good!

Saturday was another day of indulgence as we had a wedding to go to.  Chris and I went up to visit with the peanuts before the wedding ceremony – it was funny to walk into the NICU in a dress and heels!  Chris’s friends came to meet Colton and Keltie prior to the wedding – they have their own miracle baby who was a 25 weeker and she has been our inspiration throughout this journey.  It was so wonderful to have Stuch and Jen visit and meet them – they are truly a couple who know exactly what it is we are experiencing.  It meant a lot to me and was especially important to Chris, so I’m glad they wanted to see them as I’m sure it brought up a lot of memories from six years ago and that couldn’t be easy.

The wedding was great – again, another wonderful evening with friends we unfortunately don’t see as much as we’d like because of where everyone lives.  I think we’re running out of people left to get married which is what brings everyone together, so I’m hopeful they’ll start putting together an annual weekend away with our families again.  The last one a few years ago in Hershey was awesome  – and now Chris and I will actually fit in as we’ll have kids to bring along! 🙂

Chris had to fly out this morning for three days, so it was Mommy’s job to kangaroo both of them – especially since we didn’t get to kangaroo at all yesterday because of the wedding.  I ended up spending about two hours kangarooing each of them!  When I called to tell the nurse I was coming up, she said Colton was a little antsy and that she was glad I was coming up and she was hoping I was as she knew he’d be better if I held him.  That made me feel so good and I was happy to help!  I read Colton a book that my friend Lillie had bought them called Are You Awake? by Sophie Blackall – the dad in the story is a pilot!  We also talked about being a big boy and how strong he’s getting – he was 2lbs, 11oz today!  And we chatted about how he had to be nice for his nurses because they’re trying to help him be healthy enough to come home and meet Lucy and Cooper.  And we talked about going to the beach and playing in the sand.  It was a very nice one-way discussion!  Colton was much better after our snuggle session and before he went back into his isolette, my MIL and SIL came for a visit and they got to see him (and hear his very boastful cry!) and that was nice, too.  Lindsay hadn’t seen him yet without anything on his head / face – I think she fell in love all over again with my handsome boy…

Next up was Keltie and she was having a good day, except her blood pressure was high.  We snuggled for almost two hours as well – starting first with a visit with Grammy and Auntie Lindsay and then ending with the Are You Awake? story and some discussions about her being big and strong – she was 2lbs, 7oz today!  We also talked about what she wanted to be when she grew up and how she will not be allowed to wear short, tight skirts like the young girl I saw earlier in the week outside the hospital.  I figured I might as well start the conversation early…

The blood pressure thing has me really uneasy – before I left it was even higher, so I spoke with the doctor and they’re keeping a close watch on it.  I called the nurse tonight and she was working to get a good urine sample to send off to see if there was anything telling in her urine.  She just called back within the last half hour and there were some red blood cells, so they’re going to have a kidney u/s done tomorrow to see if there is a blockage or if they can determine what specifically is going on.  She is otherwise doing really well – eating, pooping, peeing, her breathing is good, heart rate is good, and she seems okay…  The doctor said it could be a sign of some slight damage to the kidneys from the chronic lung disease, it could just be prematurity, or it could be a blockage (with that being the least common).  It’s not a critical issue and it’s something that can be managed noninvasively if it is one of those things – so we’re just keeping our fingers crossed for Keltie and sending positive thoughts and prayers her way.

Tomorrow is a big day for two other reasons – one is their big eye exam to see if there are any issues at this point with their retina development (looking for retinopathy of prematurity or ROP).  I’m really hoping everything looks normal for both of them, but I know the risk is there.  The other big thing is that my friend Candace is in town and is coming to the NICU to take some pictures of the peanuts!  She does amazing work (check out her FB and website) and I’m hopeful she’ll be able to work her magic in between the constraints and challenges of the NICU. 

But, most importantly, I hope that Keltie’s blood pressure issues are easily resolved and that both babies continue to do well and have a good week.  I don’t so much like bumps in the road…

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