Preemie Diaries - Meghan and Blaise's Story, on his second birthday

So I know most of my posts have been preemie related over the past 2 years, but I just can't help it. Prematurity has become a huge part of me.

So I hope you stay and walk this journey with me, because Prematurity continues to amaze me. It has taken me on the craziest, most rewarding ride of my life and along the way I've met many phenomenal people.

Today I introduce you to Meghan and Blaise. We have been brought together through (you guessed it),Prematurity.

I'm always in awe of where they started and how far they've come.

Below please find their journey, as told by Meghan.

I had wished for a baby and had tried for over a year to conceive and when my turn finally came around there wasn't a happier mother to be around.


At 18 weeks gestation I went for the routine abnormality blood tests that came back with a chance of spina bifia, my gynecologist sent me to a fetal specialist for a full fetal scan, that's when we found out we were expecting a little boy, Blaise, and he was perfect.

He was thriving and had absolutely no signs of spina bifia. We went on like normal - going for our monthly scans, eating right, drinking my water and taking my vitamins.

29 weeks came along and I can remember as clear as day, it was a Friday, and I had my check up with my gynecologist who was going on leave and I was relieved to know that he then wouldn't be on leave around my due date.

However during my scan he asked alot of questions about Blaise's movements and what they felt like. I had very little amniotic fluid left, I did not leak - I went to antenatal classes so I knew what to look and smell for.

My gynecologist sent me back to the fetal specialist to scan and advise if there was enough fluid to carry Blaise longer.

As it was a Friday afternoon he was already closed for the weekend so I was put on strict bed rest.

Monday morning I called for an urgent appointment and I was told that Dr is very busy he could only see me the following week. I told the receptionist that I couldn't wait that long I need to see him today I would even sit and wait for a spot.

I rushed over to the hospital, which was quite a distance from Alberton, where I stay. During my scan the Dr was very quiet, the occasional "ummm", "aaaah". We listened to Blaise's heartbeat over and over and it was strong but Blaise had stopped growing due to the lack of water.

On the scan he weighed a mere 800g.

Now my gynecologist was on leave, like gone out of the country, leave. I was sent to the Dr on call, when I got to another hospital I went straight to the maternity ward where I was strapped up to monitors and started a course of steroids.

Blaise didn't have enough water to wait another week.

The gynecologist on call had decided to deliver Blaise at 30 weeks on the Wednesday, he organized a bed in the NICU for Blaise and got the neonatologist up to date.

At 2 o'clock on Tuesday morning just before my next dose of steroids Blaise's heart beat became irregular. The gynecologist was called in and I was prepped for an emergency c section.

Blaise was born at 3:47 weighing a whole lot less then we expected. At a staggering 580g and 29cm tall, classified as a micro preemie, with a 15% chance of survival!

He was given oxygen and rushed to the NICU. At the stage I was in severe shock that I simply couldn't get a word out, I couldn't even ask if my baby was OK, I didn't even get to see him.

Blaise spent 84 days in the NICU. He was a strong little man, he fought his Cpap after a day but remained on oxygen.

He didn't have any infections but his tummy was too immature for feeds. He rejected the donor milk and was left on vein feeds for a few days until his tummy settled.

Once he got my breastmilk he managed OK. He got a total of four blood transfusions, one during a growth spurt. Can you imagine the hunger he felt not being able to get a feed in for 6 hours before the blood was administered?

He never got an infection and he was simply there to grow.

Blaise was released from the NICU weighing 2.3kg a far way from his 580g he was born at. He is now a healthy happy 2 year old little boy full of adventure and smiles.

While it hasn't been a walk in the park its been worth it and I'm grateful that God believed I was the best mom for Blaise, because I couldn't imagine my life without him.

If you haven't been in a NICU before you don't know the faith that lives in there. Miracles do happen and I've seen it in there, not just with Blaise but with many other babies that went through the NICU while we were there.

I give thanks to Dr Mnisi and the nurses at the Netcare Clinton for their healing miracle work they do every day.

"Being the parent of a preemie, means you're extra special. After all God doesn't just pick anybody to witness a miracle."

Xoxo
T

Preemie Diaries - South Africa's youngest surviving preemie goes home.

On the 9th of April 2019, Samantha Nyweba, spontaneously went into labour. She was rushed to Bertha Gxowa Hospital, east of Johannesburg. There she was told that she was having a miscarriage.

She ended up giving birth at only 21 weeks, to a baby girl, Anathi Nyweba,  who weighed just 680 grams at birth.

On the 2 July 2019, after spending 84 days in the NICU, baby Anathi finally got to go home.

"I first got to meet Samantha and Anathi when my organisation Preemie Connect went to Bertha Gxowa Hospital to gift the preemie parents with a goodie bag filled with essentials and also to give them hope and encouragement. 

With me being a preemie mother myself, I know first hand how hard and sometimes lonely the premature journey can be. Having support through the NICU journey is great but it's once you leave the safety net of the hospital that you really require support.

Preemie Connect plans to be there throughout this journey alongside Samantha and Anathi. "

Anathi is a miracle baby and the youngest surviving premature baby in South Africa. (by gestation).

Her story gives hope for all other babies, born this soon, especially in Africa.

We wish both mommy and baby all the best as they get to finally go home.

We are also so grateful and appreciative of the hard work and support that the staff of Bertha Gxowa Hospital have given.

With love,

Tasmin
Preemie Connect

Preemie Diaries - Happy Second Birthday

Can you believe my Preemie has just turned 2? Neither can I! I never thought we'd make it to day 2 let, alone 2 whole years. And although the second year of life has come with its own trials and tribulations, I am so thankful that we have been lucky enough to reach this great milestone.

This journey has been the most remarkable of my life. Yes it has been hard. Yes it has been uncertain and yes its been a roller-coaster. But it's also been filled with so many magical moments. Moments I took for granted the first time I became a mom.

You see we are so busy just trying to get through each day that we really do take for granted the simple things.

A cry: I remember my first born suffered from colic (as a new mother back then, I didn't know it.) And it drove me insane!! But now I appreciate that sound. You see my Preemie was intubated for a while so I could not hear him cry in the beginning. And the first time I did, it was truly music to my ears.

Holding up his neck on his own: This mile stone, took what seemed like forever to do, but the first time he did, was magic. Something so simple, filled me with awe.

Solids: This has been 1 of the tougher parts of prematurity for us. Soft foods were easy peasy but we struggled with lumpier foods, struggled to learn how to chew. And so we had to see a speech therapist. And we have basically mastered it now. Some days are still harder than others but every time we are able to eat a whole "big boy" meal, it's still a win.

Sitting on our own: He conquered that like a champ and I thought everything else would be just as quick and simple. But as prematurity has it, some things take a little more time and patience.

Talking: He was always been ahead in this regard. He started babbling after a few weeks of being home. He said his first word at 5 months old and ever since then he has just been making strides. He's now forming sentences.

Crawling: This 1 hit us for a 6. My little one didn't crawl for the longest time. In fact we had to go for physical therapy for this. He army crawled for months and the therapist told me he would never crawl on all 4s. Well he sure showed us! At 15 months he started crawling on all 4s.

Walking: This 1 has been the hardest of the milestones to reach. And believe it or not we are still trying to reach that goal, at 2 years old. On the positive side he loves walking while we hold his hands. He can walk and walk and walk like this for hours. And just very recently (in the past week actually) he took his first 2 independent steps. For some this is just the norm but to a preemie parent this is 1 of the greatest achievements ever.

Yes, this second year has been filled with even more appointments. From speech therapy, to occupational therapy, to physical therapy and of course our neonatal follow ups. But I just look at it as our Preemie family extending. Afterall, it takes a village.

I look at my baby boy (although technically he isn't a baby any more) and I am in awe. I am so, so grateful. More grateful than I have ever been for anything in my life. God chose little old me to bare witness to a miracle. And I get to witness it every, single day.

God has made me appreciate all the small things. A cry, a laugh, a word all the things we normally take for granted, I appreciate. Because I know that things could've been so much different, this post could've been so much different, I could've been so much different.

So to you son, on your second birthday, I would just like to say thank you. You have brought hope, peace, understanding, appreciation and so much more love into our lives.

XOXO, T

Happy New Year - A look back on 2018

Happy New Year LLE Family. I wish you everything of the best for this new year.

Shoo, time has really flown by. Now I know that I have been M.I.A for quite some time but as you know I had a preemie baby and boy has he kept me on my toes!

I am so happy to report that he is doing great and has exceeded all my expectations.

I have been really focused on the prematurity stuff over the past year, educating myself, lending support and of course raising awareness like there's no tomorrow.

So yes Life, Luv, Everything kind of took a backseat. But with baby boy doing so well I can now start focusing on the blog again full time. (Yay!)

I wanted to start this first blog with all the positive things I was able to accomplish with regards to prematurity. You see when I started this journey I realised that the lack of support for premature families was so prevelant and that no-one was focusing on the well beings of the parents. (I mean healthy, happy mommy and daddy equates to healthy, happy baby). And so I formed the online Support Group Preemie Connect .

Preemie Connect has grown from strength to strength and has opened a whole new world for me.

There were so many people that came together to help me realise my dream of hosting an event for World Prematurity Day 2018. What was supposed to be me going back to the hospital where my baby was born, to gift them with some knitted goodies, turned into 2 wonderful events. I was also very fortunate to have been referred to Selin Bentoom who is based in Ghana and the founder of African Foundation for Premature Babies and Neonatal Care (AFPNC). She has been instrumental in mentoring me and guiding me with making World Prematurity Day 2018 a success.

Many individuals as well as companies jumped on board. Not only were we able to have close on 300 knitted hats,booties and jerseys but we were able to fill up goodie bags with essentials for mommy and baby.

The greatest blessing was being able to go back to the hospital along with my fellow preemie mommies who have been beside me throughout this journey, and speak to the new preemie moms. Gosh it was such an emotional moment but it was the most rewarding and blessed feeling ever. (I'm still on a high from it!!). I also managed to get a Pastor to come in and pray with us and do one on one prayers with some of the moms (and from my personal experience that was such a blessing and so needed at that particular time.)

I also hosted a blood drive. I was amazed by the turn out and even more so, excited to have met a few preemie moms that I have given support to over this year. Coming full circle was so amazing and I am in such awe of these woman and especially the babies. Working with SANBS was so amazing. They made it fun and were so welcoming and friendly.

Through this year there have been many platforms where I have been able to share my preemie story. We were featured on Embrace , Side By Side and most recently in the latest report from the World Health Organisation WHO

So as you can see it has been quite the year for us. I hope you enjoyed this look back on 2018.

In the comments let me know how the past year has been for you and what you wish to achieve in this new year.

Much love
XOXO, T.


Accrediation to all our donors for World Prematuriy Day:
Anjo Wash And Stitch
Bennetts
Noonoo Pie
Mrs Milk
Eucerin
Jeppe High Preparatory School
Bar One
AFPNC

Preemie Diaries - A letter to you on your first birthday

I'm sitting here a week after your birthday and I have been a total emotional wreck.

I can't believe we made it to a year. I am in awe of you and God's work. I just didn't think we would make it.

All these memories keep popping up on my facebook page. Happy photos of my baby bump. This time the journey was supposed to be different. And yes it was, just not the different I thought it would be.

I am grateful for the journey we have been on. No-one really understands it but us. I have sacrificed alot in this past year but believe me the sacrifices were totally worth it.

I never knew that somebody so tiny could teach me about strength. I mean I always thought I was a strong person but I also knew my strength had limits. The day you were born you showed me that I was stronger than I could ever imagine. And after experiencing prematurity I can face anything.

When you were born I wasn't even wake to see you, to hear you cry for the first time. I only got to meet you 9 hours after your birth. It was super scary. You were so tiny, literally skin and bones. I couldn't fathom how you would ever make it. I was scared. I cried for 4 days straight. I felt like I was going to loose my mind and I couldn't understand why God would do this to me. After everything we had been through why me.

But now I know why. Sometimes we loose sight of what is important in life. We are so busy trying to build the "perfect life" at the cost of everything else. I thought that as a working parent I was being the best parent. But never being present for your kids is not living. For 10 years I worked, I worked hard, but I missed out on so much with your brother.

God needed to give me pause. For 54 days all I did was focus on you. And every day was different. Some days were really good and we could see the end of the tunnel and other days were really bad that I thought we would never make it.

I have to  give credit to your dad. He is a man amongst men. Things weren't always easy between us. But from your conception till now you have changed both of us and made our marriage better. Thank you son.

I have never seen a man more dedicated to his kids than your dad. He would do anything for you and your brother. You had him wrapped around your little finger from the moment he saw you. You guys bonded instantly. And since he was the first one to see you out of the two of us, you have had a special bond.

Dad would go to work every day and come and see you every night. He prayed all the time. He would go to bed at 12 just so that he could phone the hospital to make sure you were ok.

Not many men would do that and hope that you will one day become a great man like him.

I've been hugging and kissing you even more this past week (is that even possible?) because I couldn't see past day one let alone 365 days later.

I wish you all God's greatest blessings son. And I thank you for teaching me so much over this past year. I cannot wait to see what the next year as install for us.

XOXO, Mom.

Preemie Diaries - Cup Feeding

The day the feeding tube is removed is always an awesome day. You know you have graduated to "big baby" status and are one step closer to going home.

I was always under the impression that my baby would breastfed immediately. (I clearly had no notion of how this premmie thing works.) But then I figured my baby would be bottled fed the breast milk. Wrong again.

Imagine my shock when I first saw a baby being cup fed. I kid you not. It is the most amazing sight ever. But it is also very frustrating as well.

The cup feeding is great in teaching baby how to suck, swallow, breathe. But it is so time consuming and frustrating, especially if you have never done it before.

I was lucky in that I got to try breastfeeding when baby reached 1.5kg. So although the feeding tube was still being used, baby was learning how to suck.

You really take for granted how much a term baby can do in comparison to a preemie baby. I mean I had no idea in the beginning that baby would need to learn how to breastfeed. I never knew that my milk would not come in naturally as soon as baby was out. I also never knew how hard pumping and sustaining milk supply would be, because baby was separated from me and because he was not sucking.

So many unknowns. So many new things to learn.

I think the most frustrating thing is pumping. It's all you do, all day and all night. In the beginning I was super frustrated but once I realised that my baby's life depended on getting that breastmilk, momma went into overdrive. I did everything and took everything I could to help my baby. And trust me it was extremely hard work. But we did it. We were one of the luckier ones because not everyone is able to produce milk.

The first time I tried cup feeding I was so scared. I didn't understand how a baby so small would be able to do it. But I sat and watched other babies doing and enjoying it and I just perservered.

When we were discharged I thought that that would be the end of cup feeding but no, in order to administer the vitamins baby needed I still needed to cup feed and also to make sure he was in fact still getting enough milk.

One of my biggest goals was to make sure that baby put on weight as he should be. Measuring every gram gained (and sometimes lost) became part of everyday life.

I don't know who came up with the cup feeding phenom but boy are you a smart someone. And thank you.

I've put up a little video that we took back in our cup feeding days so that you guys can see just how amazing it is.

XOXO, T

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