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Archive for the ‘Human Milk Fortifier (HMF)’ 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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…and it has done wonders for lack of time and sleep!  On Tuesday I returned to my full-time job and it was bittersweet.  Monday was a hard day for me as it was the last day where all my time and attention could be devoted to the twins and the NICU.  Driving home that night, I sort of lost it.  Okay, I lost it big time.  It was more anger than saddness and I’m sure that returning to work was just a trigger – but it really comes down to one thing:  I’m over it.  I’m over this whole NICU thing, I’m over having to drive to see my precious babies, I’m over the whole experience.  I just want them home.  But of course the reality is – they are where they need to be and I have to swallow that fact and move forward.  So, that’s what I did. 

I did receive the warmest of welcomes back from my colleagues and peers and that helped make it better.  I do have to chuckle that my loving boss said that we’d ease me back into things.  That lasted about a day (and to no fault of hers – there’s just a lot to do!) and, in fact, I’ve been bringing along my laptop to the NICU and working on stuff in between cuddles with the kiddos.  But, truly, it has brought some normal back into my life and has also allowed me to experience different things at the NICU that happen in the evening hours such as weighing them. 

Both peanuts are doing well.  The doctors have been working to wean them on their flow of their cannulas and they’ve gone back and forth on that – down to 2L and back up to 3L and right now they’re hanging out at 2.5L and tolerating it well.  Colton’s oxygen has been primarily between room air (21%) and 25% and Keltie’s oxygen has been between 25% and 30%.  They’re going to try and wean them down to 2L on Monday and see how they tolerate it.  The goal is to get them to tolerate 2L and below so we can start trying to feed them by mouth!  I so look forward to that, but also recognize that brings a whole new set of obstacles and bumps in the road.  In order to help them, they started them each on diuretics to get rid of some of the adema (swelling) they have going on.  It’s not the most commonly known one, Lasix, but is a gentler one that doesn’t pose the same risks that Lasix does (the name is escaping me). 

Their growing has been wonderful!  As of last night, Colton weighed 3lbs, 11oz and Keltie weighed 3lbs, 7oz!!!  My big, strong peanuts!!!  They are off the Prolacta and are on what they call Hi-HMF to help boost the calories.  Due to the extreme cost of the Prolacta, once they reached a certain point they make the switch since the risks are very low now that Prolacta helped prevent. 

Keltie’s blood pressure has been captured and they actually expanded her dosing schedule from every 8 hours to every 12 hours, which is a sign that whatever is causing it is starting to break down.  It’s a relief to not see those high BPs on the monitors anymore.  We did have a slight scare with her earlier this week – there was blood in her urine once and so they did another renal u/s and everything looked clear.  They did a urinalysis and that didn’t show one drop of red blood cells.  So bizarre.  The doctor thinks it was a fluke or something – there’s nothing really there to say what it was but we know what it wasn’t.

Onto some not so good news – their second eye exam was on Monday and they do have Stage 2 ROP in Zone 2 of their eyes.  I don’t know if both Chris and I misunderstood or what, but when we assumed they were free and clear of it two weeks ago…we assumed wrong.  The “good” news is that this isn’t uncommon and they’ll have another exam in two weeks to check the progress.  Apparently it is not unlikely to get worse before it gets better, but 90% of the time it resolves on its own.  If not, they will need laser surgery to correct it.  Ugh – thoughts and prayers that everything resolves well on its own with no lasting effects on their vision. 

Other than that, we’ve been soaking up their absolute adorableness (is that even a word?) and loving every minute of it.  We’re starting to see them more and more awake and that’s really awesome, too.  Here’s an absolutely adorable video of Colton looking around:

Colton at 8 weeks!

Keltie at 8 weeks!

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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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