Angel Gowns

If you want to save some time and backstory you can click over to this (more eloquently written) blog to hear her story.

As a multiples parent, we always knew that we would 99% likely face NICU time. We also knew if we didn’t hit certain milestones (first 24 weeks, then 28 weeks, then 32 weeks) that our outcome could vary from the 100% success that we had to something much more dismal and hard to think of.

We saw those families while in the NICU. We were lucky enough to only have one baby on the moderately intensive side for a few days. Otherwise we were “feeders and growers.” They just had to learn to eat and keep their temp up and we could go home. We had neighbors (including my last roommate) in the closed off isolation rooms on the end for the weakest of preemies. We saw babies “code” (either stop breathing or heart rate drop) more times than I’d like to think about.

What I want to share with you today, is this. The Angel Gown program. An amazing organization called NICU Helping Hands works with NICU families providing resources for those in need. One thing that most people don’t think of is: What does one bury their infant who died without ever having left the hospital?

Here is the answer: and Angel Gown. Made from donated wedding gowns, these fabulous (and entirely volunteer) seamstresses make 10-12 gowns for those babies who need them. They are completely free of charge to the families and can be sent to anyone who needs one, you just have to ask.

Almost 9 years ago, I was married in the most beautiful gown I could find. I felt radiant and that hope and love and joy, I hope, is still preserved in that dress. As a mom, you have a fleeting image of your daughter wearing your gown, but we all know that rarely happens. 20+ years from now it will be far out of fashion and at the most will have been a dress up toy for them as children. That gown has been safely preserved an stored for 9 years now. It has traveled 6 states and completed two cross country moves.

These Angel babies will never come home, the least they deserve is a gorgeous gown. I hope the families who receive the gowns made from my dress have a fleeting glimpse of the happiness it knew as a bridal gown and the love and prayers it now covers their child in. If you have a gown, whether it has sat on a shelf for weeks or months or years, please consider donating. Sadly there are many more Angel Gowns needed than there are bridal gowns to make them from. Please visit their website at http://www.nicuhelpinghands.org/angel-gowns/ for more information and the address to mail to. If you don’t have a gown, consider making a donation to cover the costs this project accumulates.

2 years

Two years ago this morning, I walked into Madigan Army Medical Center after having a contraction in the middle of the night. After driving down the highway thinking, “Hmm, they stopped, maybe we could just go home.”

Nope, instead it began our journey with these three little crazy munchkins.

It began with this view. Every time they came to visit me, they got to see this desk and the smiling guards behind it.

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And then I got my room. After a couple days, I even got moved to a new room with a window bed. Roommates came and went (some I’ll never forget, others I’ll wish I could!). But I got to look at this every day.

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And then I got hospital priviledges. Sure, it was in a wheel chair. But goodness, the relief of eating cafeteria food from the cafeteria rather than from a tray in my room was exciting. And fresh air!

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The two amazing men in my life visited every.single.day. (Well, okay, except one, but that was preschool graduation night and there was a big party, and I’ll forgive that!)

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It’s hard to believe it was 2 years ago already. I’m pretty sure the next 28 days will go by a lot faster this time around than they did the last!

Fisher House banner

October 15th – Pregnancy and Infant Loss Awareness

I’m going to borrow the words of an amazing woman that I know, because she is much more eloquent than I. You can find her story here and meet some amazing quads in the process!

The loss of a pregnacy is the loss of a dream…regardless on how many months, days, hours or even minutes you have known there is a life growing inside you.  The dream has begun the moment you see those two lines, you hear those words you have waited so long to hear, you shared the news with those who are the closest. When it all too soon becomes a nightmare that you wish you could wake up from it becomes a memory you never forget.  It clouds your bliss should you ever be fortunate enough to become pregnant again.  It has you waiting for the other shoe to drop your entire pregnancy.  It keeps you from fully enjoying subsequent pregnancies.

Pregnancy and Infant Loss Remembrance Day is a day of remembrance for pregnancy loss and infant death which includes but is not limited to miscarriage, stillbirth, SIDS, or the death of a newborn. It is observed annually in the United States on October 15th. This day is observed with remembrance ceremonies and candle-lighting vigils, concluding with the International Wave of Light, a worldwide lighting of candles at 7:00 p.m.   In October 1988, President Ronald Reagan proclaimed October to be National Pregnancy and Infant Loss Awareness Month stating “When a child loses a parent they are called an orphan.  When a spouse loses his or her partner they are called a widow or widower.  When a parent loses their child , there isn’t a word to describe them.  This month recognizes the loss so many parents experience across the United States and throughout the World.  This is also meant to inform and provide resources for parents who have lost children due to miscarriage, etopic pregnancies, molor pregnancy, stillbirth, birth defects, SIDS and other causes.”

According to the National Institute of Child Health and Human Development, among women who already know they are pregnant, nearly 15 percent will have a miscarriage. Stillbirths occur in nearly one in 200 pregnancies in the United States every year. Premature birth occurs in between 8 percent to 10 percent of all pregnancies in the United States; it remains one of the topcauses of infant death in this country. SIDS is the cause of about 2,500 infant deaths each year.

An Angel In The Book Of Life
Wrote Down My Baby’s Birth
And Whispered As She Closed The Book
“to Beautiful For Earth”

What, no pictures??

Nope. You get to listen to me talk today. Lucky you!!

Or more like lucky me. Lucky all of us. I think sometimes we start to forget just how lucky we are in life. Or maybe it’s just that we’re naiive and sheltered from the negative sides of life.

You see, before I became a Mom of Multiples (MoM), I was a happy mom of one happy little boy. The pregnancy was textbook perfect. I didn’t even have morning sickness. The delivery was easy-peasy. The months after were pretty good too – he was an easy baby who slept regularly in his own crib and wasn’t overly fussy. He’s had his moments in the last few years, but nothing that time out, love, and redirection didn’t fix.

Then I became one of the Secondary Infertility statistics. We learned more about genetics, reproduction, egg quality, hormone balance, and interventions than I ever thought possible. We met others who struggled, many worse than I. Every day I’d think that as bad as I had it, at least I wasn’t suffering from miscarriage after miscarriage, often in silence. You see, much like IF, infant loss has a certain stigma. No one talks about it. People who experience it suffer in silence. People who know of it try to avoid the subject because they just flat out don’t know what to say or how to help. I’ve even had friends with multiples tell me that they’ve been told by strangers their twins/triplets/etc made up for the earlier losses. No. No birth or child makes up for a loss. Yes, it may finally bring you that long-deserved family. And yes you finally are a “mom” in the eyes of those around you, but you will also forever be a mom to that angel baby.

Then I became a Mom of Multiples (MoM). I was slowly inducted into the world of high-risk pregnancy, preterm delivery, NICU life, and worse. We had an easy go of it. The only reason I had hospital bedrest was because we lived so far from the NICU and since it was military and free the doctors didn’t see any reason to send me home. Speaking of free, we never even had to make a decision in the entire pregnancy based on what our bank account could manage. We just went to appointment after appointment, any tests they thought necessary, lived in the hospital, ate the food, didn’t think twice about it. Anyways, back to the bed rest, if I had gone home I wouldn’t have even been on it. Maybe a modified, “don’t run a marathon tomorrow” type of restriction, but no real bedrest. Heck, even while on hospital bedrest I had weekly passes where we went out to dinner, walked around the mall, and I went downstairs to the cafeteria and outside daily! I had it easy.

Then my water broke and at 33 weeks we delivered. I was introduced to the world of preemies. Nasal cannulas, IV fluids and feedings, incubators for heat regulation, monitors for heart rate and oxygen, and so many other medical necessities that most people have never heard of. Once again, we had it easy. My babies were taking breastmilk from day one. They were able to be held so much sooner than many. We were prepared. I think it’s easier when you’re a mom of triplets going into an early delivery – we expected NICU time from the very beginning. We toured it, talked to nurses, talked to friends – we knew what to expect and weren’t thrown off by any of it. They asked if we would allow formula should I not make enough milk, as if it were something we’d decline. Silly things like that. Never once did we think much about it.

Then they came home. We were a family (albeit a much larger one than before). We were up at night, but not as much as some would think. We became part of this magical multiples community. I joined an amazing group of women and even with over 200 of us, the drama is minimal because we all get it – life is too short for drama and high school antics. We are all in the throws of raising multiple children, and between diapers, bottles, clothing, feeding, cleaning, and everything else, we support each other through everything, good and bad.

And that’s where the naiivity comes in. Before this journey, sure, I knew that preemies existed. I knew that children sometimes suffered disabilities due to their delivery or their prematurity. Sure, I knew that some even didn’t make it. But it never affected me because I was sheltered from it. It was the elephant in the room. If you knew someone who had lost, you didn’t mention it unless they did for fear of speaking wrong. You didn’t ask anyone with one child, “Have you had others before this that you lost?” You didn’t ask someone with a singleton, “Was he/she a twin and the twin didn’t make it?” I never thought of that. I never realized that behind the smiles of a mother watching her child take their first steps were the tears of a mother realizing that his/her twin never would because they went to heaven far too early.

In the last few weeks, I have known more amazing, wonderful, deserving women, who have lost children, than I can count. One mother who lost a baby in-utero and had to deliver both the living child and the other. One mother who had to deliver at 24 weeks due to HELLP (a liver issue) at 24 weeks, and whos first twin passed less than a few days later, while the other struggled for three weeks to pass away the other night. Several women who suffered miscarriages. And it’s not the elephant in the room. It’s the opposite – it is all I can think about. All I can talk about. I look at my children and cannot imagine if I only had one or two or three of them. How do you go on celebrating a twin’s birthday while you are also remembering the other twin’s death? How do you move on and consider yet another IVF cycle, knowing that your chances of developing a severe and life-threatening disease have now gone from 8% to 50%? How you do get past that sheer stark grief and cope?

I guess the whole point of this entire rambling story is this: Value every minute. When you see a pregnant person, and they don’t have kids, try to remember that they might have already lost one or more. If you see a mom of multiples, try not to make a negative comment about how hard it’s going to be – maybe they’ve been through worse and even the hardest day will be a joy because it’s theirs to have. If you see someone who has been pregnant a few years, try not to make a comment about when they will have children, you never know how long they’ve been trying. Behind every smile there may be grief, and if the subject comes up, let them guide how far they want to discuss it. Depending on their point in the journey they may not be ready to, or they may want to scream it out to the world. Either way – try to be supportive and loving to those you know and strangers alike, we all have a story to share, and whether through naiivity, living a sheltered life, or just through sheer ignorance, we may not understand all that is out there until we’ve been too close to it ourselves. Sometimes ignorance truly is bliss, but I’d prefer knowledge and an arsenal of love and prayer for those suffering to ignorance of their suffering any day.

A letter to a NICU mommy…

So one of my friends just had her beautiful babies at a very early age (under 28 weeks), and I was writing her a note because she had NICU questions. And it dawned on me – there are more than just her out there starting out their NICU journey, and it feels like a foreign country. There are different lights and sounds. It’s a whole new language (it takes months, years, to stop using acronyms and assuming people know what words like CPAP, bilirubin, MFM, O2 sat, and such mean!). It’s a sterile environment, every sneeze has people turning their heads wondering what you have. It’s a cold environment. It’s largely devoid of fun or lights or color as they try to keep as little stimulation out of the room as possible so the babies can sleep and eat and grow. So here goes…

 

Hey there *****, I know you’ve gotten tons of good advice about the NICU, but I just wanted to say if you have questions to let me know. Sometimes with the micro-preemies the nurses get mother-lion on them because while you are the mom and want to love on and care for your babies they worry that if something goes wrong it’ll be on them. There is always *something* you can help with, though, whether it’s just bringing a clean blanket over, holding them up while the bedding is changed, or bringing a clean hat from home so they have a part of you with them. If a nurse doesn’t seem to be friendly/want to talk to you, find a head nurse and talk to them. Tell them you want to be a part of the care. Once they get more stable, they will wait for you to get there to do feeds if you’re only a few minutes late, and eventually it’d get to the point where I’d walk in, smile, and they’d tell me who had been changed/temp taken/etc, and I’d finish on the other babies.

It truly is just becoming a part of the care team. I think the nurses get used to parents who don’t come in regularly. Seriously, one of my nurses said they would have to call a mom to remind her to bring in the pumped milk and she never stayed, just dropped it off. Or about parents that had to be called because the baby was ready to go home and they hadn’t been there recently to realize it. So many people handle the stress differently. For me, being there as much as possible and being a part of it was critical. I got a place at Fischer house (kinda like Ronald McDonald house but for military) nearby since we lived an hour away and practically lived in the NICU sitting in a rocker just staring at the babies. For others, they can only come for bits at a time because it’s too emotionally draining. We had those days too where we dragged ourselves away to go to dinner or a movie just to feel a little more normal, and as hard as it was, it really helped the feeling.

NO matter your level of medical knowledge, or lack thereof, you are a part of the care team and the most vital part of it. Even if a nurse is loving and caring and holds the babies, the feeling of mama’s skin and smell does more than you can imagine. Even just your voice through the incubator when you’re not allowed to touch them. Every little bit you can makes a world of difference, and if you show the nurses you’re there and want to learn, they will be grateful and gracious and if they’re not? Get a new nurse. Most hospitals let you have a list of nurses you don’t want on your service, and they will honor that.

Hugs, love, and strength to you mama.  It was so hard when they were on different sides of the NICU for a while and I had to pick who to sit by. Who to love on. Who would be the favorite that day. Val needed the most support for a while and it was so hard knowing that she needed that, but that by giving her that I wasn’t holding the others. It will never be easy, but it will become easier, more manageable, and while one baby is having a harder day and needs you more, don’t feel guilty – they’ll take turns and it’ll balance out in the end.

March for Babies

 

Sorry it has taken me so long to post!!

This last Saturday was the March for Babies walk here in Pacific Grove, CA, and it was a blast!

The weather was perfect, tons of people turned out, and it really couldn’t have been a better day. On top of that, there were a total of FOUR (yes, FOUR) sets of triplets there! Hard to believe, right? Thankfully it meant we weren’t the only ones being accosted by total strangers, because they could split their attentions between all of the babies!

So, without further adieu, some pictures from the day:

First good family shot in a while – even Aiden is smiling!

Playing at Lovers Point after the run.

Let’s attack Daddy!

11 month photo – not sure how many more of these we’ll get! Jacen was quite amused by Valerie’s hat.

And now let’s attack Mommy!

March of Dimes and the March for Babies

Another plug for the March of Dimes walk that we’re doing this Saturday!

http://www.marchforbabies.org/hunt2005

We are participating in the local March for Babies walk in Pacific Grove this Saturday, to raise money for March of Dimes! We have the most awesome shirts ever designed by a friend and local business owner (pictures to be posted after the walk!), and we will be running/walking the 6.2 miles Saturday morning. It’s supposed to be gorgeous. And warm. And by warm, I mean 62 degrees, but after coming from WA, that’s a nice hot sunny day to us!

If you are local and need something to do, come join us! For all or just part of the walk, it will be a fun morning!

If you aren’t local and want to support this cause, you can visit our site and make a donation.

We’ve come a long way in the last 11 months. From the above (those are our three babies), to this:

Thank you for your support!

To make a donation, visit my personal Web page at
http://www.marchforbabies.org/hunt2005

If you would like to learn more about March for Babies,
visit the Web site at marchforbabies.org.

Would you like to see what March for Babies is and why I’m walking?
Click here to see the video.

March of Dimes: March for Babies

If you know me or have had a discussion with me at all in the past about the fundraising groups at races/marathons and their objectives versus the reality of what they do, you’ll know that I normally don’t support them. The fact that if I raise the $2000 required by them, they will pay my airfare to a race, put me up in a hotel for two days, pay for my race entry fee, and include a nice dinner and a qualified trainer through the process, means that out of that amount, maybe only 25% (if that) of the funds I raise would actually go to the group I’m trying to help.

There are two exceptions to this for me.

1) Fisher House.

http://www.fisherhouse.org/

Have you heard of the Ronald McDonald houses? Fisher House is the same thing, but for military families. Their goal is “Providing a “home away from home” for military families to be close to a loved one during hospitalization for an illness, disease or injury.”

They were a lifesaver for us in all ways possible immediately following my C-Section. We remained there for two weeks, during which time they provided toys and even some meals (they had food on hand for breakfast and lunch, and dinners would be dropped off by volunteers) while we were battling the NICU and recovering. There is no way that I could have driven an hour each way from our house in Keyport, WA, to be available to nurse my babies when they were able or spend the amount of time that I did.

I will never be able to repay them for our FREE stay, but I hope to be able to pay it forward to other families in the future. I’ll eventually run my first marathon with their team shirt on and hopefully help the fundraising effort for other families to be able to continue using this amazing resource for many years to come.

2) March of Dimes

http://www.marchforbabies.org/hunt2005

The second organization that is near and dear to my heart is the March of Dimes. While we didn’t have to use any of the resources that they provide, thanks largely to the Fisher House, Tricare, and an amazing and supportive community and family, many families do. Many don’t have the resources we do. Many don’t have healthcare that paid for 100% of the $1 mill+ hospital bill. Many don’t have the knowledge base to understand what is going on, and aren’t prepared for a NICU stay.

In a lot of ways, we were lucky to have triplets and then go to the NICU. We were prepared. We knew from day one that a NICU stay of some length was most likely going to happen, and we were ready for it. When I delivered, there wasn’t a shock or worry as they were wheeled away because I knew it was coming. Most NICU families aren’t so lucky. Many have a traumatic birth, many have complications that led to that happening, and sometimes the child is whisked away by ambulance or chopper to a completely different hospital while the mother is left in recovery unable to see them for hours or even days.

Steven and I are going to be running in March for Babies and raising money because we care about healthy babies. We care about the families going through the process. We hope that by even just raising a small amount of money, some families burdens will be lessened, even if just by a little.

Your gift supports March of Dimes research and programs that help moms have full-term pregnancies and babies begin healthy lives. And it’s used to bring comfort and information to families with a baby in newborn intensive care.

Thank you for your support!

To make a donation, visit my personal Web page at
http://www.marchforbabies.org/hunt2005

If you would like to learn more about March for Babies,
visit the Web site at marchforbabies.org.

Would you like to see what March for Babies is and why I’m walking?
Click here to see the video.