November is World Prematurity Month
#prembaby
#PreemieMom
November is worId prematurity month.
2 years ago we never thought that our pregnancy would end 8 weeks early. We were never prepared for the road that would be ahead.
When we had our 31 weeks scan, we received the news that I no longer had any amniotic fluid. I was put on bedrest and received 2 Steriod shots to help with Seth’s lungs. Unfortunately Seth stopped growing and the bloodflow through the umbilical cord was not good. The decision was made that Seth would be born at 32 weeks.
I still remember my doctor phoning the NICU, the receptionist phoning the Theatre…I remember my doctor telling the NICU sister that they need to make space for my baby. I remember the receptionist saying that the Theatre is fully booked…and I still remember my dr saying he does not care and that baby must come out.
The night before I couldn’t sleep, I cried most of the night. The staff was absolutely amazing especially sister Natalie Strydom and Belinda Smit in the labour ward.
The day arrived 28th November 2018…. I’m being pushed into theatre, hubby by my side… my dr asking me which song I would like to listen to. I reply with Bohemian Rhapsody. Everyone is singing together … and then there is silence… sister Natalie is ready dr Humphrey Lewis is ready…. and then comes the most beautiful cry I would ever hear.
Dr Lewis checks Sethie, shows him to me and says I can give him a kiss… and off they go…
When I saw Seth the first time in NICU ( although I was told I would only see him the next day…. I was way to determined and saw him that afternoon)my heart just fell to my shoes. He was so small. Had this breathing thing on his face…. wires everywhere. I was almost to scared to touch him.
We were very blessed because Seth was actually very healthy… he just had to grow…. while he was in NICU I met 2 beautiful ladies. Lorette Matlala and Yulia Albertovna Olivier. These 2 ladies were my rock.
If you have a prem baby you will know the emotional Rollercoaster you will have. You are not prepared for that at all. Its already difficult to handle all the hormones post pregnancy.
I lodged at the hospital… sometimes walked 10km between my room and the NICU. I expressed every 2 hours during the day… every 3 hours at night… weekends I went home to spend time with Liam. I was torn in 2. Liam needed me, but Seth needed me more.
When Sethie reached 1.8kg’s I could start breastfeeding. This in itself was on another level. Some feeds he would latch beautifully and some feeds would end up in tears. But with the help from the Wilgers NICU nurses and sisters and loads of determination we got it right.
I will forever be grateful to all the staff at Wilgers.
No one prepares you for the journey at home. Having a prem baby come with loads of challenges. Temperature checks, making sure he is breathing…. . At first I was doing very well. I thought I’ve got this. But then it happened. Seth didn’t sleep….he was NOT an easy baby… colic, reflux not sleeping…. eventually my body gave him… I was on autopilot… I just kept going… I didn’t listen to my body… I didn’t take care of myself. I was too proud to ask for help. Then one day I just snapped! Seth’s crying and not wanting to sleep was just too much that day… the thoughts running through my mind was horrible. I turned into a monster….I constantly shouted and screamed at Liam .. that night I shouted that Vic needs to take Seth before I throw him against the wall…. I walked out…. I broke down.. for the 1st time in my life I didn’t know what to do. I phoned my mom in law. She knew something was wrong. I cried and told her how I felt. I told her that I’m the worst mother… how can a mom even think of hurting her own child. Her words to me was ” the fact that you walked away and that you can admit something is wrong. Makes you a wonderful mother”
I realised that night that I needed help. I saw my gynecologist and I was diagnosed with Post Partum depression.
I was put on medication, to treat the anxiety and depression. It was terrible. If Seth just started crying it would start feeling that I was going to have an anxiety attack. I couldn’t breath… even suicide crossed my mind a couple of times.
The lack of sleep, a screaming baby, a very busy toddler ( who just wanted his mommies attention), it was just all to much. Seth just never slept, 20 minutes at a time during the day, and 45 min to an hour during the night. Exhaustion was an understatement.
We took Seth to 3 different paeds, explaining to them that we think something is wrong. Its impossible for a baby to just not sleep. Every pead said he is perfectly fine and a healthy little boy. Every appointment I left in tears. I remember telling Victor that I feel like the doctors aren’t listening to us, its as if they think I am making this all up. The paeds also recommended sleeptraining. Yes, sleeptraining! Seth was 8 months old( 6 months corrected) Well, we couldn’t anymore and decided to go with the the sleep training. We contacted Goodnight Baby, and the consultant came to see us. We opted for the gentle approach as we do not believe in the CIO ( cry it out ) method. For 2 weeks we tried this, to the book, not giving in, but still nothing. The only thing we achieved was the fact that he could fall asleep on his own without being in the arms. He would fall asleep quite easily, no screaming, no fuss. It was a big win for us. But he would not sleep longer than 45 minutes.
I turned to social media, posted on every mommy group in the hopes of something that would help. I would get the normal reply of sleeping trough is a milestone every time. You see, I never expected him to sleep through, I just wanted him to sleep, at least for 2 hours at a time.
Everyone that met Seth said ahh he is such a good baby, and we would always reply, wait for night time. No one believed us, no one except for people in the household believed us. Seth’s crying and not sleeping was starting to affect Liam aswell. Having a grumpy emotional mommy the whole time also didn’t help much.
The medication I was on, was helping and I started feeling better, but then I would relapse again if it was a rough day.
One day I found a group on facebook called Happiness Factory Safe Space, I was feeling so depressed and decided to post on this group. For the first time there was no judgement, only support, and this is where I met Santie, Santie also had a prem baby, and understood what I was going through. She invited me to a whatsapp group for Prem babies. In this group is a NICU sister, a Paed, a Psychiatrist and a Occupational Therapist. I was so sceptical about this group. Untill Sister Linda phoned me, oh I cried over the phone, and everything she said made so much sense. She understood where I was coming from and how I was feeling.
You see what we don’t know is that even though the NICU is a wonderful and the right place for your baby to be in, it also leaves an Adverse event on your baby.
Please read this article ;https://www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-81232015000300937
When sister Linda starting telling me all of this, the 1st thought I had was, how did I not know this? Why did I not do research. It has made me realise that everything is not always black and white.
The next thing I was told made even more sense. Dr Linda mentioned Sensory Processing disorder. Please read the following article : https://www.prematurity.org/child/sensory-integration-preemie.html#:~:text=When%20a%20baby%20is%20born,atmosphere%20can%20agitate%20sensitive%20preemies.
We were then referred to an Occupational Therapist who specialises in Sensory issues. We learnt so much about attachments and the role it plays, and how important sleep is for babies especially prem babies. We got exercises we had to to with Seth called Vestibular exercises. ( The vestibular system is important to motor development; vestibular dysfunction may lead to delayed postural control and locomotor development at later ages (10). Children with histories of preterm birth are at greater risk for motor disabilities and poor postural control than those with normal deliveries (11, 12)
Even though the exercises made a difference we decided to take Seth to a Neurological Pediatrician. This was probably one of the best decisions we made. Finally we had a doctor who actually listened to us, he examined Sethie in depth. We told him that Seth is also seeing an Occupational Therapist , which he was very impressed with. Seth was diagnosed with Insomnia and as sister Linda said, sensory Processing disorder. Seth was placed on medication to help him sleep. Yes, my little boy has to take medication to sleep, otherwise he does not sleep.
Off course we don’t want him to be on medication for the rest of his life, but when he is ready, he will go off it. We have tried 2 months without medication, and He will not sleep. Yes he would fall asleep easily, but then he would wake up and be awake for up to 4 hours at a time.
The decision was taken by us and the Neurologist to keep him on his medication.
We were also told that prematurity will disappear when they are 2, this is not true. In some instances prem babies will always be behind with something. The chances are also that they will be diagnosed with ADHD, ADD and sometimes Autism.
Some people will think I am so silly when I celebrate every little milestone that Seth reaches. I don’t think everyone quite understands what an achievement it is.
I wish I had the support that every prem mommy needs, I wish I had known about the support group that is available. Linda and her team has been such an amazing support. And I want to urge every mom who has a prem baby to join them.
Seth will be 2 years old on the 28th November 2020, and even though it has been quite a journey, I would not change it for anything. Everyday is a gift with him and everyday he surprises us with something new. There is nothing wrong with feeling like you don’t always have everything together. But I do regret not reaching our sooner, I do regret on the time I missed out on because of my depression. So take it 1 day at a time.
Please also feel free to follow the following page on Facebook : Sensory Neonatal Nurse
I Quote some very important information from sr Linda:Early Intervention Therapy #nicu#preemie#earlyintervention November is #preemie month. So often parents, families and professionals think that prematurity ends at about two years of age. This is not true.
Prematurity can stay with you all your life. Studies are now showing that preemies exposed to severe stress in NICU in the early years present with early onset diseases such as hypertention, diabetes type 2 and mental illness such as depression and anxiety.
Developmental and sensory issues also present just before or during the time that they enter school.
Premature care is a relatively new specialty and the studies and therapies are happening daily. For parents and professionals there is a large bulk of work as to what happens in NICU and a smaller amount of work on the school going premature infants but there are the missing years from leaving the NICU door till you enter the grade 1 class room.
A meta analysis done by Cohrane shows that the preemies who have received Early Intervention Therapy after discharge showed a marked improvement in their development and they retained it until the entered school. https://www.cochrane.org/…/NEONATAL_early-developmental…
It is important to note the role of the parents as the therapist which is essential and necessary.
Attachment for the preemie and their parents is essential. It can be difficult and often the babies are difficult and the parents battleto attach because of their own depression ot PTSD.
Babies need to be regulated before they start therapy. The reason for this is that the regulated baby learns quicker and milestones are easier.
The therapy needs to be around their senses and it needs to consist of mostly play. Baby and their parents need touch and they need eye contact.
On discharge parents need to regulate baby and ensure a good routine. The baby starts tummy time early and a lot of visual and auditory stimuli using the parents and their voice is very important. For the first two years or the first 1001 days your right brain talks to the baby’s right brain. This allows for attachment if you remain calm, consistant and caring .
For many parents it can be a long road to about nine months and then suddenly the puzzle piece seem to fall in place and the baby suddenly soars.
As you sit in the NICU wondering where you ard going with the little warrior in front of you know that skin to skin is the start of you and your baby’s journey to health.
Early Intervention Therapy is designed to help you and your baby attach and help your baby adjust and enjoy their world.
NICU’s save lifes, professionals help negotiate the big wide world but only the parent can heal the baby”
Chellie's Endometriosis journey and miracle babies 