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Posts Tagged ‘NICU’

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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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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…we are bittersweetly bringing Keltie home with us today!! It is sad to leave Colton behind, but we are thrilled to have our baby girl home with us.

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Well, it’s been a while since the last update and it’s been a bit insane to say the least. 

Last Monday was the usual dreaded eye exam.  And it ended up being one of the worst days since the twins were really sick and little.  Keltie’s ROP progressed to Stage 3 in one of her eyes and the doctor wanted her to have a second opinion up at Boston’s Children’s Hospital (BCH).  Colton’s spells had reached the point where they stopped feeding him by mouth and put his feeding tube back in because the spells were so bad and so frequent.  With that, he was also ordered to go to BCH for a swallow study (his eyes were still Stage 2).  So on Monday, we packed up both of their things and were discharged from South Shore Hospital (SSH) and both babies were taken by separate ambulances to Boston.  It was an emotional nightmare.  I am so grateful, though, that one of their primary nurses, Fran, who wasn’t even working in the NICU on Monday agreed to transport them for us.  Fran came in to check on them during a break in her inservice training and I burst into tears.  I begged her to be the transport nurse if they went on Tuesday and she got right up and said she was going to do it that day.  And she did.  And I owe her the small amount of sanity I had left – it meant so much to us that she went above and beyond.  She’s so special to us and our kids.

Tuesday, Keltie had her eye exam at BCH and their ophthalmology team agreed with the doctor that it was Stage 3, but she was “pre-plus disease” which means that she is not in need of surgery at this point.  They took some amazing pictures of her eyes and showed both Chris and I what ROP looked like, etc…  Colton had his swallow study that afternoon and it showed that he was aspirating on regular breast milk thickness and nectar thickness, but that he was safe for the most part on honey thick feeds.  So the plan was for me to return Wednesday morning and feed him on the thickened feeds (and you can’t safely thicken breast milk until they are 44 weeks old, so he is now on all formula feeds thickened with rice cereal) with the Feeding Team watching to determine how long he could handle the thickened feeds.  The concern was him burning too many calories trying to suck the thick feeds and tiring out, so they prepared us that he may only be able to take 10mLs of his feed (full feeds are 60-70mLs).  Little did they know my son…

Wednesday morning I arrived and did Colton’s feed.  He finished the entire thing in 20-25 minutes no problem.  That’s my boy!  So, they were comfortable saying he could do full feeds by mouth as long as he did it within 20-25 minutes.  Colton was happy about that!  Both babies were scheduled to have surgical consult at SSH before they left for their hernias, so they did this at BCH and with Keltie they were concerned about the “hardness” of her “hernia”.  So, they schedule an u/s on her hernia to get a better look at it.  Come to find out…her left ovary had made its way into her inguinal canal and that’s what they were feeling!  The surgery team came up to speak with me and explained that due to the nature of the organ being in the canal, they had to do surgery within 24-48 hours.  I was petrified.  They were able to push the ovary back up (with Keltie screaming – the poor thing!) so they were okay waiting until Thursday to do the surgery.  That started a flurry of activity and me meeting with the anesthesiologist, surgeon team, etc….  I couldn’t believe my little 5lb miracle was going to have to be put under for surgery and I was so afraid that it was going to impact her progress with her breathing and being off of any breathing support.  Needless to say, I didn’t sleep much that night. 

Thursday morning we found out that Colton was being transferred back to SSH.  So, Chris went up to Boston to be with Keltie for her surgery and I met Colton at SSH to get him settled back in before I headed up to Boston myself.  Colton was welcomed back as the Mayor of the SSH NICU / Special Care Nursery and I felt comfortable knowing he was with people that knew him so well and loved him so much.  I got to Boston just in time for Keltie to come back to her room for recovery.  She had an IV in her head – but thankfully Chris prepared me to see that before she was wheeled in.  The surgery team fell in love with her and wanted to keep her 🙂  She did really well and ended up with a bilateral hernia repair – so two incisions about an inch or so in length.  The surgeon said he did it “on her bikini line” and I literally replied with “what do I give a shit about my 3 month old daughter’s bikini line!”  But, apparently there are some other parents who get concerned about that stuff – hey, to me, they are her little battle scars for being such a brave, strong girl!  She came up from surgery and wasn’t intubated, which I was SO grateful of.  She did need some low-flow nasal cannula support for about an hour but by Friday morning she was just like she was before surgery and doing all her breathing on her own.

Friday morning we found out that Keltie was ready to be transferred back to SSH and I headed up to Boston to pack her things and wait for her ambulance chariot to get there.  It was so nice to have them back together and back to their “home” hospital where people know and love them so much.  Fran was working the weekend and had them and it filled my heart to not have to be worried about them being further away in a place they didn’t know with people who didn’t know them like the team at SSH does. 

Since being back at SSH, they have both been doing well.  Colton is a moose and weighs 6lbs, 8oz and Keltie is holding at around 5lbs, 2oz.  They are preparing Keltie for discharge and it may even be this week!  Colton is still struggling a bit with some spells – but not nearly as much as he was prior to going on the thickened feeds.  His reflux is just brutal on him.  But, on Saturday he was put on room air with no breathing support and he’s been doing awesome ever since!

We’re getting close…there may actually be a light at the end of the tunnel.  Of course it wouldn’t come without some dramatics prior to, but should we expect anything less?

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Today I had the pleasure of sharing our story with the team leaders of Sears Holdings Corporation’s March of Dimes.  As you may know, Kmart and SHC are huge supporters of the March of Dimes and I have been with SHC for 7 years providing HR support to the Home Services and Supply Chain divisions.  Kmart, its customers and associates have officially raised more than $100 million for the March of Dimes over the last 29 years – a remarkable fundraising achievement!

I thought sharing our story was a good opportunity for the team leaders to connect their efforts with someone “local”.  I will admit – it was hard to write out their story and not feel emotional and I think that this is a feeling that will never go away.  But, I made it through it and it was a nice opportunity – they showed pictures of the twins in the conference room while I spoke. 

This is a nice segway into what I’m asking from all of you who have followed our story from the beginning and continue to provide your love and support – please consider joining us in support of the March of Dimes to honor Colton and Keltie.  If you’re local to us, consider joining our team and walking along the canal.  If you’re not able to join our team, please donate to this wonderful organization that dedicates its resources to research, education, and efforts towards the prevention of prematurity and increasing the health of babies.  Surfactant, a drug developed through the March of Dimes efforts, was given to Colton and Keltie in the delivery room and contributed to saving their lives so this truly hits close to home.  You can join our team or donate by clicking on the link below – please show your support of the Half Baked Crusaders!

www.marchforbabies.org/team/t1816093

 

How your donation helps!

 

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Oy – apologies about the lack of updates for two weeks!!  Bad mommy.  I’ll start with some awesome pictures of special visitors that have come and held Colton and Keltie:

Grammy and Keltie

Nanny and Colton

Nanny and Keltie

Auntie Lindsay and Colton

Auntie Cheryl and Colton

Pilot Daddy and Colton

Daddy and his little girl Keltie - with no breathing support!

Mommy with her hands full!

 Well, it’s been a crazy two weeks!  We have truly enjoyed that they are in a good place physically so we’ve been able to share cuddle time with some of our close family.  It’s also so nice to have them in cribs – we can touch, see, feel, hold, and shower with love any time we want.  Here is a run down of the progress since the last update: 

  • Colton is now 5lbs, 5oz!  He continues to take all of his feeds very well, except he needs help pacing and is suffering some horrible reflux.  They started him on Prilosec and we essentially have to wait until he outgrows it.  It makes me tear up every time I see him refluxing and in pain from it – and it is causing him to have spells which is scary and I hate it. 
  • Keltie is now 4lbs, 13oz and she has been taking all of her feeds by mouth for the last 4-5 days!  She is doing better at eating – her pacing is very good and he isn’t falling asleep as much as she once did.  She is really doing remarkable in this area – like a lightbulb went off and she said “oh you just need me to take all my bubbas and breathe – why didn’t you just tell me that?!?!”
  • Both of them were successfully weaned off of the high-flow nasal cannula and onto the low-flow nasal cannula.  This was a huge accomplishment for them!  Colton is currently between 25-50mL of flow at 100% oxygen which is very good.  He’s had some room air tests and does well for a few hours, but with his reflux spells it’s hard to keep him off of it.  Keltie is currently on room air with NOTHING on her face!!!  They had been trying her on and off and finally she ripped her feeding tube and cannula off over the weekend and they figured – hey, let’s try it and she has done excellent!  She is going on 48+ hours of being completely off the cannula (for feeds too!) and it’s so precious to see her sweet face with nothing on it. 
  • Colton had an u/s and x-ray of his man parts.  They were concerned about some swelling and a potential hernia.  Well, he actually didn’t present a hernia during the u/s, but he essentially has hydrocele, which is fluid in his scrotum and it should resolve on its own with no issue.  And one testicle is floating up and down the canal, but again is normal for preemies and even some newborns and should resolve on its own with no issue. 
  • Yesterday was dreaded eye day.  We HATE eye day.  And for good reason – their ROP progressed.   BAH.  Still at Stage 2 but he’s coming back in a week because we’re now at a “moderate risk” for needing laser surgery.  It SUCKED to hear that – but it is what it is.  At least the technology is available and ROP doesn’t equal blindness anymore.  I’m hoping they don’t need the surgery and that it stops progressing and gets better – please keep them in your thoughts and prayers for that!
  • We tried them both on the bottle system I planned to use – Tommy Tippee.  Well, Colton did pretty good but Keltie completely failed a few attempts with it.  She never spells when she eats and she spelled each time with it.  So, the NICU is trying Dr. Brown’s and it seems to be helping Colton’s reflux slightly and Keltie did well with them yesterday and we’ll see today.  I’m a bit bummed as I really wanted to use the Tommy Tippees because of their similarity to the breast and good success with being able to both breast feed and bottle feed.  But – it is what it is and if we end up with Dr. Brown’s, we have a few from my cousin so we’ll exchange the Tommy Tippee bottles we didn’t open.  Who knew there would be so much difference!

We’ve heard it mentioned quite a few times that they could be home within two weeks – but we’ll believe it when we’re physically walking out of the hospital with them.  One of the neonatologists hugged me goodbye on Friday because she’s on vacation for a week and a half.  I told her she was crazy.  It’s just funny as they always thought Colton would be home before Keltie, but now it’s the opposite because of his reflux and spells.  Who knows now if there becomes an issue with their eyes…  We’re still taking it day by day, but we’ve definitely stepped up our game in getting the house ready!  Our master bedroom closets have been revamped so Chris can actually move his stuff in – thanks to my stepdad Ken!  He’s also working on organization cubes for the nursery closet and a toybox for the peanuts!  Yesterday my dad came and painted our stairs (that were refinished the day my water broke) and the trim and so that is finally all done.  It’s a real all hands on deck approach to getting us ready to have the peanuts come home!  Chris and I finally found a bureau that fits what we wanted as a bureau / changing table and he’s picking that up today so we can stain and finish it (“we” as in “Chris”).  Our mission is to have the nursery completed by the end of this week! 

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I’m typing this from an iPad so let’s see how it works…

Well, it’s been a crazy week here at the NICU. We started on Monday with the disappointing news that instead of being weaned down on their high-flow nasal cannulas, they were actually weaned up and Colton was started back on his caffeine (clearly he’s my child and needs caffeine to keep him remembering stuff, like to breathe). That was tough to hear and it really made us feel like we were stuck in this darn breathing rut and are never going to get out.

Fast forward a few days and here is what we have:

– Colton is officially 4lbs as of last night! Keltie is right behind him.

– Both babies successfully took an entire bottle by mouth on Friday (and received Sip Sip Hooray certificates to prove it).

– Colton has successfully latched twice to breast feed.

– Both babies successfully maintained their own body temperatures in their shut-off isolettes and are now in open-air cribs.

– Colton has taken all feedings by mouth since Friday. The kid LOVES to eat!

– Colton has been weaned on his flow to 2.0L and today to 1.5L

This is all so crazy and goes to show that the comparison to a rollercoaster ride is absolutely accurate.

Note:  I started this update above on Sunday, 4/1 and didn’t get to finishing it so here we go…

Today, Day 69, they had the dreaded eye exam.  Chris was off so he went up to meet with the doctor at 8:30am and he said it was terrible.  The babies screamed the entire time.  I am glad I haven’t been there for their eye exams as I don’t think I could handle it.  Colton still has the Stage 2 ROP, so it hasn’t progressed (positive) but it hasn’t resolved any either (negative).  Keltie has Stage 2 and Stage 3 (boooo) in one area, but he’s not too concerned about it because it’s not in a “bad” area.  Whateverthehellthatmeans.  BAH – stupid ROP.  They will be checked again in two weeks.

Colton is still taking all of his feedings by mouth and last night before I left they took his feeding tube out of his nose!!!

Notice something missing from my cute face?!

Keltie is slowly but surely working on her eating.  She has taken a few full bottles and usually takes some / most of her bottle, but sometimes she’s just not engaged in the process.  They think it may be contributed to her anemia and her mouth muscles are not as strong as Colton’s – but we’ll continue to work on it with her.  I asked the neonatologist about it and she said that Keltie is “normal” and Colton’s experience is “not normal”.  So, it was good to know she’s not necessarily behind at all – just that he’s taken to eating at a surprising rate.  

Slow and steady wins the race, right?

We are just so proud of them and all they have accomplished!  They truly are miracles and I love that everyone celebrates even the smallest of milestones with them.  The nurses keep coming over and complimenting them on everything they’ve done and all they’ve overcome – and of course telling us just how darn cute they are.  We know, we know – we’ve officially been wrapped around their little fingers, too.  And we wouldn’t have it any other way.

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