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Archive for the ‘Necrotizing Entercolitis (NEC)’ Category

According to the Milk Maid app I still have on my phone even though it’s been around 7 months since I stopped pumping, I had the following stats over the 6 month period I exclusively pumped for the twins:

– 561 pumping sessions

– 14.64 gallons of milk pumped

– 3.34 oz average pumped per session

That is a lot of time and a lot of milk.  Yet, it was still the HARDEST decision made to stop pumping.  I couldn’t keep up with the demand between having Colton in Boston and then back at SSH and Keltie home – my body just shut down its production.  I had dreams of breastfeeding but those dreams didn’t include learning how to do so in front of nurses in a hospital setting.  There are things I learned I had to let go of when my plate got too full – and pumping was one of them.  Colton couldn’t have the breastmilk because of his reflux / thickened feeds requirement so it was just Keltie and she got it exclusively for the first six months of her life (fortified with things for extra calories).  I would say that is a win and hope that both of their health this winter is attributed to the antibodies they got from my pumping efforts.

But, let’s be honest – pumping sucked.  You feel like a cow and it’s annoying and it hurts.  But it was the one thing I could give them that no one else could – so I did it.  Many women, however, don’t have that opportunity.  Many women try so very hard to produce milk and it simply doesn’t happen.  Those women typically feel defeated, like a failure – especially when your baby is in the NICU and there is so much pressure to give them that “liquid gold”.  With technology these days, though – there are options and new products being developed and I want to talk about two of them.

First – local milk banks.  Just like how I make an effort to support local farms and businesses, I also think first about local options.  Some NICUs work with local milk banks that moms donate their excess breast milk to for use by babies in need.  I suggest those thinking about milk donation options to consider local donation first.  For those in the New England area, there is the Mother’s Milk Bank of New England.  The Mothers’ Milk Bank of New England is a non-profit community milk bank operating under the guidelines of the Human Milk Banking Association of North America (HMBANA).  From their website:  Our goal is to provide donated, pasteurized human milk to babies in fragile health throughout the New England area.  Many mothers of ill and premature infants are unable to provide enough milk for their babies. The gift of human milk can mean the difference between life and death for these infants. MMBNE is proud to be part of this tradition.

If local donation isn’t an option for you, there is another option.  Let me rewind a bit – Colton and Keltie were the first babies at SSH to use a human milk fortifier called Prolacta.  You can read more about it here.  It was explained to me that this relatively new product, and very expensive one at that, dramatically reduced the risk of NEC in preemies, which can be a life threatening condition.  Colton and Keltie tolerated it very, very well and we were happy to be the first to have it at SSH.  A freelance writer who works for Prolacta Bioscience Emailed me a few months ago about discussing milk donation for Prolacta on my blog.  After doing some research and thinking about how I wanted to present the information, I asked her to write a guest post.  Prolacta is a for-profit, privately held company – unlike the local milk banks in your area that a non-profit organizations.  I feel it is important to put that out there so you can be informed and make the best decision if you’re trying to decide what to do with your excess milk.  I have not been compensated by Prolacta for this blog post – I am simply a happy mom of two of their “consumers” who knows how important lowering risk odds is when in the NICU.  Again – my motto in life is to always support your local community, when able.  But, if that is not an option, take a minute to read Kylie’s guest post below:

Thank you for letting me share this message with your readers! I am happy to be working with Prolacta to help spread awareness about the need for donor breast milk to help micro preemies all around the country.

I was a NICU mom for 4 days. After two years of infertility, on what was supposed to be the happiest day of my life, my perfect baby boy was born with a collapsed lung. As I stood there watching him struggle for breath in his little incubator, I felt completely helpless. I couldn’t hold him, or change him, or even breastfeed him. After years of waiting and longing and preparing to care for my child, I wasn’t able to provide him with the breast milk that I knew he needed.

I have nothing but respect and empathy for parents who spend days, weeks, or months in the NICU. Like most moms and dads, they worry over their children. Unlike most moms and dads, much of their children’s well being is out of their control. That’s why the Helping Hands Milk Bank collects breast milk for preemies – in select hospitals; parents now have a choice about what to feed their babies.

Prolacta Bioscience uses the milk donated through Helping Hands to create a fortifier for premature infants that is added to their mother’s milk in a concentrated form so they get all the nutrition they need. This is the first commercially available milk fortifier made from 100% human milk.

Nursing moms can register to donate their excess breast milk through the Helping Hands Milk Bank online in about 15 minutes. Helping Hands provides all of the supplies and pays the shipping costs. I love the fact that busy new mothers can do something this awesome without ever leaving home!

I was so lucky to be able to take my baby home a few short days after he was born. Our nursing relationship took some time to establish, but eventually we both grew to love it. He is now an active, happy 20-month-old. I’m so thankful I could provide his nutrition for him. Some moms never have that option, but now there is a way that the rest of us can help.

If you are interested in learning more about how you can help premature babies by donating breast milk, click here to visit the Helping Hands Milk Bank site.

All content provided on this project26weekpreemies.wordpress.com blog is for informational purposes only.  The owner of this blog makes no representations as to the accuracy or completeness of any information on this site or found by following any link on this site. 

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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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