Miracle Milk Stroll 2016 – Why it’s personal for me

It’s that time of year again! Best For Babes Foundation’s third annual Miracle Milk® Stroll is happening nationwide from May 13 through 15th.

This year’s event is personal for me because I have my own baby in the NICU. I know first hand the importance of human milk for preemies because I’ve seen my 1lb 6 oz, 24 weeker thrive on it and he’s now 33 weeks and 3lbs 12oz in just 9 weeks. A mom I chatted with who had her baby next to mine refused donor milk for her 23 weeker and he got NEC and had to have surgery and I never saw them again.

Raising money for and awareness of the importance of human milk for preemies is the whole reason for the Miracle Milk® Stroll.

NEC Society states, ”Feeding premature, fragile and compromised babies human milk – whether from mother or donor — has been shown to reduce the risk of  necrotizing enterocolitis (NEC) by 79%.  5,000 babies each year contract this often deadly and painful disease and 500 infants die annually.” NEC causes indescribable anguish to babies and parents. Just one NEC-related surgery can cost $200,000, not including lifelong complications and treatment. The AAP recommends donor milk for fragile babies, yet 60% of NICUs don’t use it.

[Breastfeeding my 9 week old, 33 weeker in the NICU]

It’s not a march, or a walk for distance. Each location will decide for how long or how far they choose to stroll.

I’ll be joining my local stroll here in Berkeley on Sunday, May 15th if I can pull myself away from the hospital, my baby, for a bit. If it’s anything like last year’s event, it’s just going to be a fun family event with a walk around the park at some point. Come join me if you’re local! Share the event page! There are also other events in the Bay Area over the weekend – Fremont’s gathering is on Saturday, May 14th. Check out Best  for Babes for more details. If you don’t feel like ordering a t-shirt or registering online ahead of time, you can totally just show up. 

From Berkeley’s event organizer Gail Moak: “Registration and MMS branded shirts are NOT required to participate. All are welcome. Registrants are entered in a drawing for items from our sponsors, so there is a benefit to you as well as all the non-profit partners. Consider wearing pink-ish or black clothes.You can buy shirts and other fun stuff here.”

How cool is it that a national meme was made from my photo from last year’s stroll? This is Lia Munoz and her family. 

[Lia Muñoz Bristol and her family]

Will you join me or can you attend your local Miracle Milk Stroll this year?

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Preparing my children for bringing their preemie brother home

I bought or was given a couple preemie story books since my youngest baby was born two months ago at 24 weeks and I thought I’d share them in case anyone else is looking for how to prepare their older children for their new sibling’s NICU stay and coming home.

These are the books I have in my library. (Now, I’m not getting paid by Amazon or anyone to link to their books but here you go, just so you don’t have to search around for them.)

Soon by Jessica Watson
The Story of Katie Rose: A Preemie’s Journey by Harold and Phyllis Davis

[Reading "Soon" with my girls.]

I think having both books in our library is really great for the kids. My eldest, who is six, really liked The Story of Katie Rose because she’s wrapping her brain around everything her brother needs to do to come home and it’s all about the details of the nicu stay with photos of everything. It made me cry, going through the pages, seeing Katie Rose’s progression and finally going home and seeing her photos after she went home. Soon is great for the younger kids. And I still cried reading it because I could see how the parents looked worried when the mother went into labor early. It’s an emotional thing, being in the middle of my NICU journey, you know? Anyway, my four year old and two year old like Soon because it’s illustrated and short.

They cannot wait to bring their little brother home. Of course, we still have at least another 6-8 weeks. They beg to see him every day and we take them in once a week or more if scheduling works. I feel like the books, seeing him and his photos and videos, talking about him and how it’ll be when he gets home has helped them feel connected. They see photos of him in his isolette, my husband and I holding him skin to skin, and always ask to watch videos when I get home from the hospital.

[Skin-to-skin selfie holding my 8 week old preemie, my favorite view in the world]

Speaking of attachment parenting, that’s one thing I wanted to see more of in the books – breastfeeding and babywearing! Oh well, they’re still great.

They also look at his little clothes in the drawer and this week I think we’ll buy some preemie ones for him to wear in the hospital. Every week they help me wash and fold his sheets for his isolette. They also love drawing our family with their brother in my arms and my eldest did this drawing as well, every step needed to bring him home.

[My eldest's drawing of everything her brother needs to get off to come home]

How did you prepare your older child(ren) for their preemie sibling in the NICU & coming home?

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Breastfeeding my preemie for the first time

It’s official! My newest little son and I have started our breastfeeding journey! He tried to nurse for the first time this week and I am over the moon excited! He’s 7 weeks old / 31 weeks gestational age and tiny, only 2lbs 12oz. I can’t believe the time is already here. I mean, I’ve had weeks to think about it, to look forward to the day, but the nurses and doctors said he was likely a week or two away from evening thinking about it. But it’s finally here. He’s been rooting for a week or more, throwing his head around, nostrils flaring, smelling around for milk while he’s on my chest, skin-to-skin, when he’s awake and hungry, so I knew it was soon, but he’s never gotten to my nipple.

How did our first breastfeeding session happen? What did it look like?

Well, we were doing skin-to-skin when he woke up around the time for his feeding (when the nurses push my milk through a tube into this stomach and I give him some milk on a swab for him to suck on). He rooted, did that adorable little instinctual breast crawl, and literally threw himself at my nipple while opening his tiny mouth wide, and sucked a little. Hooray!!! That was so much for him though. He looked a little surprised and tired and fell asleep soon after. But it was a perfect start.

I nearly cried. I had my camera near and asked the nurse to take a photo of us. Here we are, together, trying for the first time.

[Breastfeeding my preemie for the first time at 7 weeks old / 31 weeks gestational age]

He didn’t latch exactly because it was his first time and it seemed like his mouth was so tiny in comparison to my nipple, and he had a feeding tube in messing with his tongue, but I know he’s working on it, getting acquainted with the process and will do it eventually. I just love that he suckles, or does that tongue movement, while he’s sleeping. He hasn’t done that on my nipple yet but I know the day will come. And as much as I don’t like pacifiers, he does suckle on one occasionally while he’s tucked in his bed so he can practice. That’s what the nurses say it’s for anyway, practice. I think he’s going to be a natural breastfeeder when he’s a little bigger and stronger. 

If I’m being honest, I spent the first month of his life worrying that he wouldn’t survive, or would have to live with lifelong disabilities. Now that I’m past feeling those dreadful feelings, I moved on the the next step of worry – that because of his early birth or some sort of disability, he wouldn’t be able to nurse like my other babies. I mean, I haven’t been a mess but you know, these things are embedded in my brain. Before this, his surprise premature birth, I felt confident in my breastfeeding ability. I’d nursed three babies successfully, but he’s my first preemie and this was my first time pumping, waiting to start nursing weeks and weeks after birth. So I introduced the idea that I might have to bottle feed, that breastfeeding might not work, just to wrap my head around the possibility, but I think we’ll be okay.

Thankfully, I haven’t had to rely on exclusive pumping to establish and maintain a milk supply because my two-year-old is still nursing strong. (Hooray for us, making it past my personal breastfeeding goal and the World Health Organization’s & AAFP‘s breastfeeding recommendations!) So I don’t have to worry about having milk when my new baby is ready to actually get milk out while breastfeeding in the following weeks.

Reflecting on where I am in my life right now, I never saw myself here, nursing in a hospital again (because I never wanted to come back after my first birth, a CS in 2009), nursing a preemie in the NICU at that, but now that I’m here and we’ve started our journey, I couldn’t be happier. I know my son needs to be here to survive, I’ve accepted that, and he’ll be home when he’s ready and after that we’ll hopefully have at least a couple of years of nursing. Like my others, I plan to let him nurse until he’s ready to stop.

How did the start of breastfeeding your preemie work for you?

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**4.26.2016 Update**

My little one is 33 weeks | 9 weeks old and is still figuring out breastfeeding. He’s becoming more and more alert during feedings so we’re able to try to latch and I’m watching and admiring him as he’s learning. He had one perfect session of about 30 to 40 minutes of nursing just right and I’m looking forward to the day when that’s every session!

[Breastfeeding my 9 week old, 33 week preemie in the NICU]

**5.26.2017 Update**

I never thought I’d be this excited to be awake at nearly 2am nursing my baby. But I am because this breastfeeding journey has been the rockiest start but he’s doing it!

He’s 3 months / 37 weeks old and 6lbs 3oz now.

And here I am tandem breastfeeding my little one and his big brother for the first time.

Pricelesss!

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Baby #4: An update after 6 weeks in the NICU

I can’t believe how fast the last nearly 6 weeks have blown by. And thankfully, things have gotten much better since I wrote my last post when I announced the birth of my son, my fourth child and first preemie, my first week as a mom of a baby in the NICU, so I thought I’d do a little update.

How I’m doing

I still feel like I’m living in an alternate universe, a new life I never expected, but I’ve accepted it and I’m making it, day by day. Things that aren’t important to me and my family right now have fallen away, and that just feels right. I have felt a little guilt neglecting my blog, helping others, my activism, because I’ve gotten so much support from everyone around the world these last 6-weeks, but I don’t have any spare energy or time for it so it must be put on hold while I focus on my family. I’m feeling like my old self again, emotionally, postpartum healing wise, and energy level. I guess it was easier for my body to recover since I only made it to 24 weeks in my pregnancy, not the full 40 or more weeks. I’m 10 or so pounds up from my pre-pregnancy weight but it’s not weighing me down or making me feel tired, that I’m aware of. I feel much stronger now that I’m not bleeding so much from my hematoma. I am bleeding a little, just lochia, off and on some days, but nothing heavy or worrisome. I’m definitely in a better emotional space than I was weeks ago (I’m not bawling at the drop of a hat anymore) but I’m missing my mom more than ever (she’s been gone for 6 years now and I want to talk to her about her journey as a NICU mom of me thirty years ago) and I’m completely torn between two places – my home with husband and my three big kids and the home with my baby at hospital. I’m tired of my new routine, driving half an hour back and forth all the time, hours of driving when there’s awful traffic, but there’s nothing to be done about it except to just keep going. I wish I could live next to the hospital with my family for the next couple months to skip the driving and be able to walk over to see my baby anytime I needed. Figuring out the schedules on a daily basis for everyone is frustrating as well, when I can be with my baby, when I can hold him between the nurse’s schedules, when he has things planned, my husband’s work schedule, when I need to be home, etc. It’s draining. I’m used to only my own relaxed schedule with the kids and that’s it! I know it’ll calm down eventually though when all of this is behind us.

Besides the negative, I feel like I have so much to be thankful for. I am grateful that I don’t have to fight to see and hold my new baby, or have to stress about going back to work, insurance issues, or anything like that. I wake up each day and see what beauty there is in the world, the gorgeous spring flowers and weather here in northern California, my beautiful children, the love and support of my husband during all of this. My appreciation of the support I’ve received from my friends and family, loving people who have filled up my meal train and sent me grocery gift cards to keep my family fed, is immeasurable. I have enough friends and family to watch my kids a couple times a week so I can go to my son. We also hired a nanny for the first time ever, whom everyone likes, even my toddler, for help a couple times a week so I can go to my baby those days as well while my husband is working. My kids are healthy and adjusting fairly well, as well as I could hope, to not having me with them 24/7 like they’re used to, not having as much time with their friends and nature as before. But I know we’ll get back to our old routine in the summer. They really loved Easter this year, having Grandma stay with us for a week, and my 6 and 4-year-old had their first sleepover with their best friend just last night. And my big girl has her first loose tooth! Life keeps on going.

My big kids have such a bond with their new brother, even though they don’t get to see him every day. Here they are, peering outside his door the other day.  

[My three big kids waiting to see their little brother.]

I wish they were all allowed inside at the same time with us so we could get a first family photo but unfortunately, only two of them are allowed at the bedside at a time.

I’m feeling pretty good about my ability to provide milk for my new baby. I’ve been able to maintain a decent milk supply, my baby has so much freezer back stock in the NICU, and pumping doesn’t hurt anymore. It was borderline painful the first week or so. My toddler, who is now a fresh 2-year-old, is still nursing so I don’t have to worry too much about my supply quitting before I start nursing my new baby. That’s a huge load off my mind, actually, because providing my new son with my milk during this critical time is huge. I really hope we’ll be able to have a successful breastfeeding relationship after he’s out as well.

My baby

I’m still feeling very protective of him, not wanting to share his name, photos, medical updates here like I do with my family, but I will say he’s doing well and I have nothing but hope that he’ll be coming home in another month and a half to two months. Even if he has to stay in the NICU through my due date, the 40 week mark of June 11th, I’ll still be happy. Or later. As long as he’s able to come home. He is now 29 weeks or 5 weeks old. It was a pretty stressful first four weeks. I wouldn’t do those weeks again for anything in the world. The emotions, feeling crushed, not being able to hold him…it was the worst. Every day there was something new when we walked into the NICU. He caught a couple hospital bugs, was put in isolation, had to be put on extra meds, his lungs got worse before they got better, he had lines everywhere…It was so much to take in with nothing but hope to keep me going. But the last week has been great. I was able to hold him starting at 4 weeks old when he got off the high frequency ventilator and back on  the other type of assisted breathing machine with flexible tubing that he was on for his first few days before they switched him to HFV. Six days ago, he was put on a Nasal Cannula Intermittent Mandatory Ventilation (NC-IMV)  and I’ve been holding him every day since, what feels like the best six days of my life, or at least for the couple hours I’m able to hold him a day. When I’m not holding him, I’m wishing I was, my body feels tethered to him. I’m looking forward to holding him more and more as he grows. 

Here we are together, holding him for the first time since he was two days old. I had to wait 26 days.

[Holding my 4 week old preemie, 28 weeks old]

It’s wonderful to feel him on me, see him open his eyes, stretch out his arms and touch me. He stretched up yesterday and touched my face. I nearly cried. This weekend he’ll be at 30 weeks, or 6 weeks old, and hopefully a pound over his birth weight, landing him at 2lbs 6oz or so.

Look how tiny his little foot is!

[My son's foot at 1 month old in my hand]

All of his extra lines are out now, his picc as of yesterday, arterial line as of a few days ago, and spare IV, too. I hope he’s starting to feel less pain now. I have only heard a few squeaks as he’s tried to cry a couple times since they took his vent tube out. His throat is still healing. His plan right now is to grow, I hope. In a few more weeks, we’ll start “recreational breastfeeding” and although I’m nervous about how it’ll go, I’m still hopeful. 

That’s it for now. I need some sleep!

Did you have a preemie or did your baby spend some time in the NICU? How did you make it through? 

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**Update 4.8.2016**

One more photo. Skin to skin snuggles with my little preemie <3

[Kangaroo Care with my preemie son]

My little guy is 2lbs 9oz now at 6 weeks old / 30 weeks gestational age.

I’m finally able to hold him pretty much as much as I can now, as long as he’s happy – hours and hours a day! I could hold him from 4-6 weeks but only a limited amount with large spaces of time between holding. Now I can wake up, hold him for a few hours in the morning, put him back in his isolette for an hour or less, or longer if I need to go home, then hold him again for as long as we’re both fine, until I need to eat or use the restroom, and then again! One day this week, I held him for 9 hours. Yesterday, 7. It feels so right to have this skin-to-skin time with him, so healing, powerful.

We also moved to a room with a window this week and it’s wonderful. We were in a room with no windows or view of the outside world, for the whole stay up until now. It was a cave. I appreciated the darkness in the first room for my son’s eyes (when they’d actually turn off the lights) but I’m loving the change to a sunlit room where I can see the trees when I hold my baby and the natural light on his skin. My soul feels happy.

More good news. I’m finally finished with that super fun 30-day Facebook banishment (from my main personal account) for sharing a birth article on my Paa.la page last month.

 

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Giving birth at 24 weeks

This week has been the longest and quickest, most shocking week of my life.

I went into spontaneous early labor and had my baby boy 6 days ago at 24 weeks pregnant.

[23 weeks pregnant, a week before my baby was born]

I had no idea my Valentine’s post was going to be my last pregnancy update, that my bleeding that I’d complained about would actually cause my baby to be born a week later, that there wasn’t anything I or the doctors could do to stop it, to keep him inside longer. The whole thing, my last week of life, has been so surreal and I’m still not sure how much I want to open up about it all right now. It’s all so very raw, personal, and new for me. And my family and my husband. I feel the need to be private here publicly but I also want to feel supported.

I had no idea what it was like to be the parent of a baby in the NICU, despite being a NICU baby myself almost 31 years ago. I was only a little heavier at birth that my son is now. I feel like I’m in this new world of worry and hope and beeping incubators…I’m in a secret club of understanding parents with permanent wrist bands that tether us to our babies that we can’t take home.

This is my life. I can’t even hold him every day yet or do kangaroo care. Every day I hope that I can hold him but they say he’s not ready yet. So all I can do is talk to him, hum him our bedtime song that he heard every night in my tummy, touch his head and his feet.

[Practicing "Compassionate Care" with my baby, born at 24 weeks.] 

If I could ask my parents about how they walked this line, I would. But they’re both gone. So far, life for me is a lot of driving back and forth between my home and the hospital, getting stuck in this awful SF Bay Area traffic, heart racing to be close to my baby, pumping all the time, meeting ever rotating doctors and nurses all day, every day, wishing I was still carrying my baby in my womb, wishing I hadn’t gone into early labor, being thankful he’s alive, feeling the overwhelming desire to hold my baby all day, and bawling when they say I can’t. I hold the memory of holding him to my bare skin at birth, those first few priceless moments, catching him myself, the weight of his body, his first breaths, cries, wiggles, in my heart though. I’m so very appreciative of being able to birth him naturally, how I felt most comfortable and safe for him and myself. It was basically an unhindered freebirth just like my last birth, me catching my own baby alone in a room, completely naked and free, but this time a team of NICU nurses and doctors immediately rushed in a minute after birth. I felt safe birthing in the hospital where they could save him. It is just amazing that babies the size of newborn kittens can be saved.

Anyway, as I navigate these first few days and weeks, I would appreciate your personal stories and support to help me through. I’ll share the details of my birth story sometime and photos of my son, just not yet. Thank you for respecting my privacy.

Hold those babies tight. Live without regrets. Parent and love yourself, your partner, your children like there is no tomorrow. <3

Did you go into early labor? Did you have a preemie?

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My 4th Pregnancy: 23 weeks…Happy Valentine’s Day!

Week 23!

It’s Valentine’s Day! My girls bounced into my room just after dawn with a bowl of oatmeal. They like to tell me I’m eating some for me and some for the new baby. They’re so sweet.

Here I am at 23 weeks last pregnancy with my daughter, who was two years old:

She’s now 4 and a half!

I’m relieved to be at week 23 now. Why? Well, it’s silly really, but after I was told by the doctor I saw last weekend that in another week and a half at 23.5 weeks, the baby, should he be born early, would have a chance at surviving, so I was looking forward to crossing that marker all of sudden. It’s is strangely comforting to be past it, to think of my baby as viable. Before 23.5, she said there wasn’t anything they could do if the baby was born early. Not that I’m worried but you know, it crossed my mind.

I have kept myself in bed or home most of the last week, feeling like that’s what my body needed, rest and not much activity, to recover from the extra blood loss. It’s still tapering off. I made the mistake of going on a short walk to enjoy some nature and conversation with my friends on Thursday at our old favorite, Redwood Park, and my bleeding, which was just about done, came back. So, back to resting! I feel and see my little guy kicking all the time, especially during his active evening window around 9pm. I should really get my video camera out to capture some of these kicks.

I’m next to my napping 2-year-old right now. The afternoon seems lovely, warm with blue skies. I wonder what the day or evening will be like when my little one decides it’s his birthday in June. I’m still wondering where I will be in the mood to labor, outside in nature or inside my home. I’ll just have to wait and see.

I don’t have anything to report this week besides the fact I’ve been resting, really. Oh and I just found out that someone in my family is due with a baby on the same day I am. That’s super exciting! I know I am already sharing a pregnancy with another relative, but she’s due a couple months before me. It’s so sweet to be able to share all that’s going on with someone close, in the thick of it as well. I can’t wait for the baby boom coming up.

Did you go on best rest at any point during your pregnancy? Did you share your pregnancy with anyone?

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Out & About: Point Reyes Lighthouse 2016

We visited the lighthouse in Point Reyes again last weekend so I thought I’d share our photos. It was an absolutely gorgeous day. It felt like spring and the flowers were just starting to bloom. We saw some whales spouting, deer, elk, hawks, and elephant seals. When we went last year, it was windy and cold and we didn’t spot any whales spouting. Actually, this was also the first time in a handful of trips that we’ve gone on the weekend and taken the shuttle. It’s $7 per adult and kids are free, from Drake’s Beach to the lighthouse. My three kids loved riding it, seeing the cows and wildlife from the huge windows in the front seats.

[Shuttle selfie]

[Elk]

The shuttle dropped us off a quarter mile from the lighthouse where the normal parking lot is and we walked up the hill to the lighthouse from there.

[Viewing the whales and elephant seals from our walk up]

And we walked down the 300 or so steps to the lighthouse, and back up. Let me tell you, as a woman 22 weeks pregnant and carrying a 30 pound toddler halfway up, it was tiring!

[On the way down to see the lighthouse]

[A better shot of just the lighthouse]

On the way back, they climbed their favorite tree and checked out tracks.

[Climbing is a favorite pastime]

[Deer tracks]

Of course, after walking around and exploring for a couple hours or more, my toddler was ready for his nap and nursed to sleep on the shuttle, waiting to go back to our car. I was ready for my nap, too!

If you’re considering going soon, it’s a great time!

Have you been to Point Reyes? 

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