November is epilepsy awareness month. Our epilepsy journey began in January 2017. Conner started to not be himself...quieter, not smiling as much, etc. then I noticed some odd eye movements one Saturday. I brushed it off because I was distracted changing his ostomy bag and I convinced myself I wasn’t actually sure what I saw. A few days later, I saw it again. I watched for a second then got out my phone and took a video. That video turned out to help us get a faster diagnosis and ultimately treatment on board sooner. Conner was diagnosed with Infantile Spasms which is a rare form of epilepsy that causes significant damage. It is also difficult to control. This diagnosis changed the course of Conner’s life in so many ways. I hope to share more of those added challenges during the month of November. 💜💪🏼
Does this filter make me look less stressed about health care?
Moving to a new company means figuring out how to keep as many of C’s doctors and specialists as humanly possible.
It’s like learning a new language, math, and culture all at once when navigating private healthcare vs employee healthcare... Tuesday is cancelled and I’m gonna wing it (neither of these statements are actually going to happen).
Time in the NICU can be overwhelming, but it’s important to try to celebrate even the smallest of milestones, like “baby’s first outfit.” We’re proud to partner with @careandwear
, a leader in innovative healthwear*, to introduce the Care+Wear x March of Dimes NICU Onesie, an outfit designed especially for preemies in the NICU. Developed hand-in-hand with NICU families and nurses, the Onesie addresses both baby's comfort and clinical function, so that you can get back to celebrating those milestones. Ten percent of net sales benefits March of Dimes. Learn more at careandwear.com.
This picture makes me burst with pride. Isla, our youngest twin, has been going through some issues with breath holding attacks when she’s tired/upset. It worries me to the pit of my stomach when she starts to go dusky through not catching her breath when crying. Our HV seems to think her inability to self soothe is related to her trauma and time in PICU where she was separated from me. That’s heartbreaking in itself, so today when she found her thumb to suck and soothed herself to sleep whilst I was changing sienna, I had to snap a quick photo. She continues to amaze us everyday with her strength, determination and giggles.
#nicugrad #nicu #picu #pulmonaryhypertension #pphn #nhs #grateful #blessed #twins #twinsandmultiples #twinmom #twinmummy #mama #myviewrightnow #islahope #beautifulgirl
If I had a rose for every time I thought of you, I'd be picking roses for a lifetime 🌹
Today is World Kindness Day! I never knew there was such a thing, but I’m fairly certain it’s going to become my new favorite day of the year. We talk about kindness often around here because it’s our “big word” for the boys. If they grow up to be one thing, we hope it’s that they’re kind. Doodle thanks to my sweet friend @samireneephotography
This little superstar is so proud of herself, and she should be! She’s worked so hard on overcoming her fears and has been tube free since Saturday!! And she’s still a regular ball of energy (and only mildly dehydrated according to her paediatrician!) Again its a trial but 🤞We are basically trying to feed her milk every second we can, even though she just takes a bit here and there. It’s about her getting used to feeding herself again without pain, and also learning that drinking milk and eating food makes her feel full, happy and content. We have already noticed without the tube her reflux is much better and she’s been eating more solids too. And I’m absolutely elated. #nicugrad #oralaversion #conqueringoralaversion #29weeker #proudmummy #vivienneclaire #tubefree #ourlittlepreemie #perfectbaby #nicutonow #colourfulbeginnings
So proud of my little lady who now weighs 6x her birth weight 🙌💕🙌
This being the reality of meeting you baby for the first time. This was the day after Isobella was born and the first real day we had with her in NICU, I was so worried every time she moved incase she pulled her ventilator out or the cannulas but the nurses told me how important it was for her to move around! The alarms trigger so many memories it’s almost like we are back there again. You would never think looking at her now that this was how she was born, my micro preemie miracle ❤️ #25Weeker #Micropreemie
Let’s talk about Chronic Lung Disease (CLD)
CLD is a general term for long-term respiratory problems in premature babies. It is also known as Bronchopulmonary Dysplasia (BPD).
CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing. The lungs of newborn (and especially premature) babies are fragile and are easily damaged. With injury, the tissues inside the lungs become inflamed and can break down causing scarring. This scarring can result in difficulty breathing and increased oxygen needs. •
Some of the causes of lung injury include the following:
Prematurity. The lungs, especially the air sacs, are not fully developed.
Low amounts of surfactant (a substance in the lungs that helps keep the tiny air sacs open)
Oxygen use (high concentrations of oxygen can damage the cells of the lungs)
Mechanical ventilation. The pressure of air from breathing machines, suctioning of the airways, and use of an endotracheal tube. (ET tube is a tube placed in the trachea and connected to a breathing machine.)
CLD can develop in premature babies who have had mechanical ventilation (breathing machine). •
Risk factors for developing CLD include:
Birth at less than 30 weeks gestation
Birthweight less then 2lbs up to 3lbs.
Infant respiratory distress.
Lung disease of prematurity due to lack of surfactant.
Pulmonary interstitial emphysema (PIE). A problem in which air leaks out of the airways into the spaces between the small air sacs of the lungs.
Patent ductus arteriosus (PDA). A connection between the blood vessels of the heart and lungs that does not close as it should after birth.
Maternal womb infection (chorioamnionitis)
A family history of asthma
Breathing problems at birth
Development of an infection during or shortly after birth
#preemie #preemies #prembaby #colourfulbeginnings #beautiful #prematurebaby #raisingawareness #prematureawareness #prematurityawareness #babyboy #baby #babies #amazing #encouragement #encouraging #support #strength #thankyou #nicu #nicubaby #nicugrad #babygirl #nicugraduate #progress #bronchopulmonarydysplasia #bpd #cld #preemieissues #preemiei #chroniclungdisease
74 days. 74 days of coming and visiting. 74 days of leaving you here til next time. Because Mommy has to go home and take care of Brother so he doesn't feel left out. Because Mommy has to work. 74 days of milestones, prayers, excitement of a gain of an ounce.. 74 days of asking myself "why?".. I've watched you grow in the short span of 74 days. I've felt so separated from you; I don't fully feel like I have been able to experience the things Mommys are supposed to experience with their newborns. No more. Day 75 will be the beginning of you being home and completing our family. Day 75 will become Day One! But first, you have to do it one more night. Just one more, and you will come home to Daddy, Landon, and Mommy! You are the strongest, fiercest, sassiest little girl I have ever met! I'm so proud to be your Mommy and I can't wait til tomorrow, my sweet Sadie! 💜
#SadieStrong #WarriorPrincess #preemie #preemiemom #momlife #micropreemie #preemiebabe #NICUgrad #duedatesaredumb #warrior #preemiepower @ourlittlepreemie @preemiebebe @fromminitomoose
Call me sappy, call me a typical parent...I teared up when my daughter brought home her Kindergarten picture. I am just so proud of this young lady. When our triplets were born 5+ years ago, we never imagined our lone survivor leading a healthy life. We expected Peyton to face many challenges and delays due to a serious brain bleed, a hole in her heart, and several other issues that come with being born at 22 weeks gestation. But here she is, perfect in our eyes; a happy and healthy child, oblivious to the challenges she faced early on. There are often difficult reminders that there should be three children with us--starting team sports, going off to kindergarten. But, seeing my miracle child beaming with pride in her school picture takes away the pain and sadness. God has big plans for this girl. #survivingtriplet #triplets #22weeker #preemie #micropreemie #nicu #nicugrad #infantloss #schoolpictures
With 4 clicks on the computer we put together a last minute birthday celebration for this little 3 year old! So grateful for friends willing to celebrate with us (among the chaos!) and make the day so special for this little love (so she won’t know her real birthday is Thursday 😂) #emeryallen #emersonclaire #nicugrad #29weeker
Our sweet boy has BIG plans a month from today! ❤️
I strongly believe in the power of prayer and with it God can move mountains! One month from today our sweet Noah boy will undergo major surgery to repair his kidney. We ask that you add Noah, the doctors, nurses, etc to your payers and prayer list at church. I can’t honestly say that as his Mama it doesn’t scare me a little knowing he will be under anesthesia for so long and as a nurse every single possible thing that could happen BUT my God is bigger than my fears. God has BIG plans for our sweet boy and I know God will show up in a BIG way on December 12th. I thank you in advance for praying this month for our sweet boy. ❤️ #noahjames #ourmiracle #nicugrad #godisfaithful #hecanmovemountains
••••• 5 MONTHS OLD ••••• I can't believe these two and how lucky I am. This month the boys started to laugh, roll over, talk (and never stop talking). They really "noticed" each other for the first time and smile at each other all the time. They have developed a special love for mom and dad, tried peanut butter for the first time, and they are just perfect babies. We love them so much!!
Identical twin girls Sofia & Jasmine were born at 24 weeks weighing 600g & 550g. Sadly the next day beautiful baby Jasmine passed away in her parents arms. Sofia is now one and this photo is everything 💕
"Thankyou so much for these dolls. This is the closest I will ever get to having a picture of my girls together. Sofia held her hand as soon as I placed her down. Finally I can hold my baby again"
I’m not sure who snapped this photo, but I’m glad I have it. Holding Simon today is no big deal, just swoop him up! But when he was brand new, it was quite the process. I put a robe on and sat down while his nurse helped me get comfortable - pillows under my arms, feet up, water to drink (but not too much, as getting up during a hold isn’t possible), phone sanitized and by my side. Then the nurse would call the respiratory therapist to come assist. They’d raise the top of his bed and together pull the tiny 2 pound baby and all his cords over to me. When we held him, it needed to be for about 45 minutes to an hour. Long enough for a full sleep cycle, not too long that he’d be over stimulated. No rocking, stroking, or patting because that would disturb/overstimulate him. I’d sit there in silence listening to the bubbles from his CPAP machine and jokingly tell the nurses we’d need a fish tank in his room when he came home. They’d come in to check his temperature and also every time he had a Brady or desat. I tried not to move. I tried to think about exactly what it felt like to hold my baby who wasn’t supposed to be here. A baby so, so tiny with thin skin and who couldn’t even open his eyes yet. Because as much as it was a terrible experience, most people don’t “get” to feel their sweet baby so tiny on their chest. When time was up, it was the same process to carefully put him back with the CPAP, monitors, PICC line, etc. It seems so intense, and a bit dramatic for me to even type this all out, but I simply don’t want to forget it.
Little miss got 2 month vaccines, weighed in at 8 lbs 2 oz, and measured 20.5 inches! She’s more than doubled birth weight and grown 4.5 inches. Doctor is so happy with her progress. So much to be thankful for this thanksgiving season! ❤️🙌🏻 #mckinleylauraelizabeth #twomonthsold #nicugrad #preemiebaby
When Max was born eight years ago, surfactant treatment (research funded by March of Dimes with support from people like you) helped save his life. You can make more breakthroughs for babies possible when you donate this #prematurityawarenessmonth
. And thanks to our partner @aldiusa
, your donation will go THREE times as far with a special triple match through #worldprematurityday
- November 17: http://bit.ly/2F2aUTy
One week from today is the anniversary for the day my water broke with London at 19 weeks pregnant. I will NEVER forget that day. I already was a high risk pregnancy due to me bleeding the entire 19 weeks, but I NEVER thought this would happen, nor did I know it was possible. I remember laying in the hospital bed as they did the bedside ultrasound. When the dr came in he asked me if I wanted to wait until my husband got there to give me the news. I said “No tell me now what’s going on?” The nurse held my hand and he sat beside me on the bed and said “Jade, there’s no fluid left. I’m sorry but your membranes have ruptured, and your going to be delivering your baby tonight, and she will be stillborn” I begged for a c section because I didn’t want to push her out. He said unfortunately I would have to do it vaginally. I was heartbroken, I remember balling my eyes out and I couldn’t stop. He said there was no chance at her survival. Not only did I have ruptured membranes, I had a subchorionic hemotoma and a shortening cervix. They told me 90% of women with one of those diagnoses their baby’s don’t make it, I had 3 of them. They told my mom outside of the room that my baby was not going to make it. There was no chance. One week from today. You were wrong doctors. 💕 •
#23weeker #micropreemie #preemie #nicugrad #lifebeyondthenicu #motherhoodunplugged #motherhoodunfiltered #momblogger #motherhoodrising #pprom #premature #preemieawareness #fraservalley #langley #surrey #momlife