#prematurityawareness

[mod-realty-okc]

Thank you OKC for supporting #worldprematurityday in the local community! 📸 by @lapplekamp & #repost from @staylorofokaz 💜💜💜#prematurityawareness #marchofdimes #marchofdimesok #okclife #okcliving #okclocal #wearpurple (at Oklahoma City, Oklahoma) https://www.instagram.com/p/ClFnW2ctbLP/?igshid=NGJjMDIxMWI=

[suramed-health-center]

Premature birth is a birth that happens too soon, before 37 weeks of pregnancy. This #WorldPrematurityDay, learn more about #prematurity here: https://www.marchofdimes.org/find-support/blog/world-prematurity-day

[qurbook]

[irishprematurebabies]

Today is World Prematurity Day. Today is about increasing awareness of prematurity. Today we stand united around the world. This year's focus is on the introduction of skin to skin immediately after birth. The message to be conveyed is " A parents embrace is a powerful therapy"  In IPB we have been massive advocates of  skin to skin care since 2009. Research has documented its powerful effects on preterm babies and parents. The WHO is pushing the message today across the globe.  Preterm babies and parents both thrive with skin to skin care. #worldprematurityday #worldprematurityday2022 #Ireland #skintoskin #kangaroocare #preterm #neonatolgy #pretermbirth #prematurity #prematurityawareness #neonatal #nicu #nicunurses #nicuparents (at Ireland (country)) https://www.instagram.com/p/ClD40tgqmKH/?igshid=NGJjMDIxMWI=

[khamiltonsblog]

Going through everything we have been through with my daughter Jesslyn, I have PTSD from it. I hate to admit it but I do. I frequently check to see if she is still breathing. The only time i don’t is when I’m holding her. Being a parent to a micro preemie is so hard. If you’re wondering what a micro preemie is, it’s a baby born before 26 weeks gestation and weighing less than 750 grams. My daughter was born at 25 weeks and 3 days and only weighed 510 grams.

[kelleestewartinspires]

💜A hero isn’t always big and strong a is simply one who has the strength and courage to overcome overwhelming circumstances 💜 it’s #worldprematurityday 🙏🏽💜✨ #preemieawareness #preemielove #prematurityawareness #fertility #fertilityjourney #fertilityawareness #faith #hope #strength #fightwithlove @kstew222 (at God's Love) https://www.instagram.com/p/CWX-19pLoJQ/?utm_medium=tumblr

[indoramahealthcare]

" Make a contribution and help to increase the quality of care for premature babies and their families. Take care, stay healthy and be safe on this World Prematurity Day. " -Indo Rama Pharma #worldprematurityday #prematurityawarenessmonth #prematurityawareness #prematurity #prematurebabies #MEDS #healthylifestyle #healthyliving #healthylife #healthcare #pharmaceutical #pharma #quality #indoramapharma #medicine #medicinal #thirdpartymanufacturing (at Manakpur Industrial area Yamuna-Nagar) https://www.instagram.com/p/CWX6hd7hylp/?utm_medium=tumblr

[cortneymaylee]

She makes me such a proud momma. 2 years and 8 months old, so smart, curious, and just loves everything about life. This is what an “unviable” 22 week preemie looks like ❤️ #22weeker #22weekpreemie #22weekpreemieawareness #miraclebaby #prematurityawareness #prematurebaby #tinybutmighty #2years8months #willowharpernoland

[mod-realty-okc]

Today is Prematurity Awareness Day. Did you know that currently in the US 10.5% of births are pre-term? March of Dimes, through funding & research and innovations, wishes to close that gap. Please think of moms & babies today and wear purple to show your love. 💜#worldprematurityday #prematurityawarenessday #prematurityawareness #prematurityawarenessmonth #marchofdimes #marchofdimesok #forthebabies #forthemoms #wearpurple (at Oklahoma City, Oklahoma) https://www.instagram.com/p/ClEjjLDpH3p/?igshid=NGJjMDIxMWI=

[tauetazeta]

Tau Eta Zeta Chapter is honoring the smallest among us on Prematurity Awareness Sunday. Join us, with your purple ribbons as we raise awareness and support the ongoing efforts for healthy babies and moms everywhere. #ZPhiB #ZPhiB2020 #ZPhiBMD #THZ #MarchOfDimes #ZPAP2020 #PrematurityAwareness https://www.instagram.com/p/CHiJVZBltAB/?igshid=vd1h5k0w1n9k

[holdingtinyhands-blog]

We served lunch today to our families at Mercy and were able to wish fond farewell to beautiful Vivian and her mom and dad as they left the NICU as a family after 53 long days. We also were able to meet sweet Matilda who won our raffle prize! It's such a blessing to be able to serve all of the great families and staff of Mercy's NICU! #prematurityawarenessmonth #prematurityawareness (at Mercy Medical Center Nicu) https://www.instagram.com/p/B4qTISPnPwP/?igshid=1hiq9drqsb54y

[khamiltonsblog]

It took me a long time to feel comfortable sharing my story. I’m finally at the point of wanting to talk about it, so here it goes…. When I was 25 weeks and 3 days pregnant I gave birth to my daughter. It was one of the most scariest days of my life. And I say “one of the most” because something else happened, which I will go into more detail later. My pregnancy was pretty normal and healthy. The only issue I had was morning sickness. I went to the doctor about 3 weeks prior to going to the hospital. At that doctors visit, everything was fine. I noticed my feet were a little swollen but it didn’t bother me. About 2 weeks later I swelled. My feet looked like bricks and I didn’t have ankles. It was leg to foot. I knew something was wrong when I couldn’t keep up with my husband in the grocery store as I was so out of breath. The next morning I called the doctor and they told me to go to the ER as they thought I had a blood clot in one of my lungs. The blood clot was ruled out, but I wound up having severe preeclampsia and it was only getting worse. It took them forever to get my blood pressure down. They told me 2 days later that I could have died as well as my daughter if they didn’t get my blood pressure under control. And the strange thing is, I normally have low blood pressure. Anyway, I was giving steroid shots to help with my daughters lungs. On Saturday, June 26th, just 3 days in the hospital, my husband and I were told that we were having a baby. I had to have an emergency c-section. My daughter weighed only 1 pound 2 ounces when she was born. She was in the NICU for FOUR months. I’ll continue with more of my story later ♥️

[yogamyff]

"Phototherapy" oil on canvas, 2018. . First of a series that I'm currently working on. I've been wanting to do this for years and I've been putting it off. Definitely not commercial art, but very personal. . . . . . . . #prematurityawareness #worldprematurityday #marchofdimes #marchofdimes2018 #artistmeetsmother #artistmeetsmotherhood #painting #newartwork #workinprogress #arte #pintura #bellasartes #artistry #limitedpalette #uiuxzone #figurativepainting #artshare #contemporaryart #artgallery #myart #yogamyff #impressionism #paintingprocess #wip #yogamyspaintings #conceptart #njarts #njartist #yogamysart #studiosunday https://www.instagram.com/p/Bpr4Optj0Yq/?utm_source=ig_tumblr_share&igshid=75496jm9jk8o

[averagelizajane-blog]

Counting Blessings

It’s nearly 11pm on Thursday and my eyes hurt I’m so sleepy.  I’m angry because I’ve been up since 5am and going NONSTOP; I passed exhausted on Monday and hit zombie-teacher-mom-tired by Tuesday night. As usual, my two kids were in bed by 9pm, but I’m forced to stay awake until 11pm, again, tonight, as I do every night, night after night, every.single.day.  

I can’t remember the last time I wrote a blog.  Life took over.  I’ve been REALLY wanting to sit down and share an update, but between starting a newish job (8th Grade English) and juggling the typical everyday grind – I haven’t been able to make it happen.  

So why now?  What made me actually sit down in front of my computer … It’s NOVEMEBER!  My favorite month due to Thanksgiving & Prematurity Awareness Month!  AAAANNNNDDDD, even though I am struggling A LOT with my sleep, my weight, my organization, my parenting skills, and my overall wellness, I have much to celebrate.  I was reminded of the extent of my blessings tonight when I pushed Anne-Marie’s two nighttime medications into her feeding tube, and I use the term “pushed” literally! There was a time when we couldn’t actually push the syringe down with any kind of tiny force.  We would need to gently and SLOWLY move the top of the syringe down very carefully because the smallest amount of anything into her stomach would cause her to vomit. Now, I give her medicines as quick as possible so I can get to bed!  So, as I sit here and think of ALL we have overcome in just three and half short years, I cannot help but get a little emotional.  

 A RECAP

My second daughter Anne-Marie is a miracle.  

I used to hesitate using the term miracle (I actually didn’t like it) because I never felt like I “deserved” one.  As ridiculous as it sounds, I felt that God couldn’t possibly perform a miracle in my life.  I was raised going to church, but that didn’t equate to being spiritually mature or confident in my knowledge of God.  I knew the basics, but that’s it.  Therefore, I knew God doesn’t only work miracles for “good” people, he sees everyone as worthy … but I couldn’t help but feel inadequate.  It is extremely difficult to put into words, but the best way I can describe it is I felt God had way more important prayers to answer than mine.  Almost 4 years ago when I had a life-threatening pregnancy complication (preeclampsia with HELLP syndrome) and had a premature baby, I very much felt more “lucky” than the recipient of a miracle.  

I couldn’t have been more wrong.

I did have faith and I did wholeheartedly pray for a miracle, but I was unable to TRULY believe 100% that my prayers would be answered; I was scared my baby would die. Anne-Marie was born at 25 weeks gestation.  She weighed 14.8 ounces.  She was 10 inches long.  In other words she was smaller than TINY – about the size of my iphone 8 plus with my case.  She had an Apgar score of 2 and it took a skilled neonatal team 5 tries at intubation, but she survived the initial birth.  In addition to her traumatic yet miraculous start, there are several other details from “early on” that stand out as being heaven sent…

**My best friend Maggie saved my life.  Besides being intellectually gifted, she’s intuitive.  She knew what was going on with me and my pregnancy.  When my symptoms and bloodwork became alarming, she made sure I got the care I needed.  I am so naïve, I was going to go to my local hospital.  (Not knocking them at all – but I needed a hospital with a level IV NICU) Maggie insisted I go to Duke.  She’s knowledgeable in her field of women’s health and knew I needed to be monitored at a hospital equipped for a micropreemie delivery.  She sat in on a meeting while I was being admitted and helped put all the pieces of the puzzle together.  Plus, she was the calming presence that can only come from a trusting friend, which was exactly what Bradley and I needed during such a scary time.  Without a shadow of a doubt, Maggie was put into my life so many years ago for several reasons, and I choose to believe one of those reasons was to save my life at age 31.

**Prior to delivery, when I was being monitored like crazy for seizures, I vividly remember laying in my hospital room wide awake (very alert to be on Magnesium Sulfate) praying to God that they wouldn’t deliver Anne-Marie on my Leah’s birthday.  My worst nightmare was for Anne-Marie to not make it and then every year, I’d have a birthday (Leah) and the anniversary of a death on the same day.  Well, once again I am thanking God for unanswered prayers because as it turned out, Anne-Marie did need to be delivered on Leah’s birthday.  It’s actually a pretty cool blessing.  I take it as a pretty big sign from God that He is ultimately in control; I am forever reminded to trust him.  

**Anne-Marie spent nearly 7 months in the NICU.  She was very sick during part of that time.  There is one day in particular that is difficult to think about.  She was about 2 weeks old.  The “honeymoon” phase was over and her breathing wasn’t great. Her team wanted to change her breathing tube out to the next size up.  I don’t really know in medical terms what triggered this event, but I believe she just couldn’t handle the stress of being extubated then reintubated.  I walked into the room and the lights were up bright (unusual) and people were all around her isolette.  A respiratory therapist was bagging her, a was nurse were administering medicine, doctors were having a discussion, the social worker was trying to make me feel comfortable, and a separate nurse was logging everything they were doing into a laptop on a cart (very unusual).  Anne-Marie was unstable.  The medical team was anticipating the worst.  A hospital chaplain came to ask me if I wanted Anne-Marie to be baptized.  That was when everything hit me.  I asked one of her doctors if I should call my husband.  He responded that my daughter was very sick and she could die at any moment. My memories from the rest of the day are a little blurry, but I remember Bradley driving straight from work and being there in his dirty, greasy work uniform. We spent the night (without sleep) in a room off the side of the waiting room because Anne-Marie was in critical condition.  I remember texting everyone who I thought would legit get on their knees and say an honest prayer for Anne-Marie and asking them to PLEASE pray for Anne-Marie.  It is weird feeling, needing something SO SO MUCH, yet being so helpless.  In that moment, when I sincerely knew people were praying for Anne-Marie, me and Bradley, and our situation – a sense of peace came over me – one that can only come from God.

FASTFORWARD (to more miracles!):

It hasn’t always been easy, but Anne-Marie is now thriving.  This is the first time I can actually say that.  Before, when people would ask how Anne-Marie was, I would say, “Great!” only because that was the easiest thing to say.  Now, it is the truth.  Now, Anne-Marie tolerates all her tube feeds; no more vomiting.  She still requires a tube feed every 3 hours and it still takes an hour to complete so a lot of her time is still spent feeding – but at least she isn’t suffering anymore.  (Anne-Marie threw-up multiple times a day for the first couple of years of her life. This is not an exaggeration.  It was extremely sad to witness.) And sure, I have an occasional headache dealing with prescriptions/ insurance/ refills/ pump supplies – but overall it is not too bad, not anything like it used to be. Anne-Marie has made strides in all areas of her development:  She is eating more smooth purees by mouth, tolerating new sensory stimulation easier (loud noises, crowds, hand-washing, brushing teeth, etc.), and, most excitedly, she is TALKING!!  It’s been a LONG time coming, but another prayer has been answered.

This is the most recent picture I have of Anne-Marie.  She is at school celebrating Thanksgiving with her teacher and classmates.

Side-Note (necessary to FULLY grasp the magnitude of this answered prayer):

I am impatient, like really impatient, just ask my husband…  

Call it a mother’s instinct, call me pushy or crazy, I don’t care … but I knew it, I knew Anne-Marie wanted to talk.  I could see it in her eyes.  I read online about Augmentative and Alternative Communication, more specifically, Speech Generating Devices (SGDs), and strongly believed that it was going to be Anne-Marie’s pathway to oral speech.  I was optimistic but sadly, not many of Anne-Marie’s “key players” wanted to listen.  I’d continuously pitch the idea of getting a tablet to help Anne-Marie talk to anyone who would listen: my husband, her teachers, insurance people, her doctors, my friends at work, and even her SLPs, but unfortunately they were all reluctant. All of the non-medical/speech/ educational people would reply with the worst response ever, “She’ll talk, then you’ll want her to shut up!”  (I cringe --- it’s like telling a woman who is having trouble getting pregnant, ohh you just need to relax and it will happen.)  I never took it personally, because I know the individuals meant well, and they didn’t know it would hurt my feelings, but it did nonetheless. Responses like that are hurtful because what if she never talked, that happens you know.  And then when I asked all of the professionals who knew Anne-Marie about SGDs and AAC therapy, they were polite enough, but I never felt 100% heard.  I do not think they were opposed to Anne-Marie having an iPad necessarily, I just feel like their primary focus for Anne-Marie was somewhere else at the time. And to their credit, maybe it should have been.  However, I wanted her to have an iPad to help her talk and I wanted it immediately. She needed it.  When I’d talk to her, I could read her eyes… she had so much going on, so many thoughts, so much to say, but she couldn’t – she didn’t have the right tools…  laminating pictures and using PECS and Velcro just wasn’t cutting it (for Anne-Marie & no pun intended – lol).

So, Anne-Marie had a speech evaluation done at Duke on August 2, 2017.  Even though goals to trial AAC devices and begin AAC therapy were recommended at that evaluation, Anne-Marie did not have her first therapy appointment to late July 2018. For an entire year, I waited while feeling helpless.  The insurance people and the entire staff at Duke’s Speech and Audiology department know me by first name.  I called and appealed and emailed and cried and met face-to-face with a supervisor. I’d give up and quit fighting for what Anne-Marie needed.  I’d doubt myself, then try again.  Month after month.  My only mistake was not trusting God’s timing.  

Anne-Marie got her “talker” in June.  My parents bought it for her out of pocket because we (my mom and I) were determined we could watch YouTube videos and at least make a little progress.  Plus we wanted Anne-Marie to have it when school began in August.  We wanted the whole word to know just how smart she was!  As of the past couple of weeks, Anne-Marie does NOT need her talker! She only needs to have it for breakdowns of communication.  SHE IS TALKING!!  Not just saying sounds à she is actually talking! My daughter can tell me with her sweet voice, “I love you!”

I do not want my message to be misinterpreted – I do not believe AT ALL that the “talker” (Speak for Yourself App) alone was the sole reason for such a rapid progression of oral speech.  Anne-Marie has been in Early Childhood Special Education for the past 1.5 years. She gets speech therapy at school, in a clinic in town, and at Duke which are all HUGE factors! In addition, my mom is like an unofficial 1:1 teacher/OT/PT/SLP wizard who works magic with Anne-Marie.  My mom often scrolls Pinterest and TpT for activities.  She spends many quality hours with Anne-Marie each day. My mom has three drawers in my kitchen crammed full of Anne-Marie’s “Nana’s school” materials. I frequently come home to beans, water beads, pom-poms, etc. on my floor and my mom cutting out a new sorting activity that she has printed off for Anne-Marie.  My mom is a saint in every sense of the word.  She along with Anne-Marie entire village are major pieces to her miracle.

Sooo HAPPY THANKSGIVING to me!  

On this World Prematurity Day, I choose praise God Almighty from Him all blessings flow … and the blessings are bountiful. I choose to focus on what is GOOD as opposed to what is stressful.  Anne-Marie still requires a lot of specialized attention and takes a lot of out of us, BUT…

*I have a spouse who loves me unconditionally

*I have parents who love me and my kids and would do anything within reason for us

*I have an extended support system like no other

*I live in America where my special needs child receives medical assistance

*I have a job that fulfills me

*I have faith & comfort knowing God is with me in troubled waters

*I have an almost 4-year-old who is talking!

*I HAVE A MIRACLE!

[preemiemummy]

He had this spider on his head for 15 minutes before realising it was there! 😂 He cracks me up. It’s been such a hard few days for him after the weekend, but today he is finally back to his funny, crazy self! Love him so much! . . . #instatoddler #toddler #toddlersofinstagram #littleboys #proudmum #parenting #snaphappybritmums #autismmum #proud #scottish #mumlife #instamum #mummyblogger #mumsofinstagram #myworld #family #ukmum #myson #photographs #micropreemie #specialneeds #autismawareness #preemiewarrior #parent #toddlerlife #makingmemories #mylove #cheeky #prematurityawareness #autism