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What can you expect after leaving the NICU?

Looking from the outside, the NICU journey only consist of the time spent between the NICU walls. This is far from the truth. Once your baby gets discharge, for a lot of parents this is just the beginning of another, sometimes lengthier journey. 

Leaving the hospital may bring a lot of joy and excitement but also a sense of nervousness. For me personally, I got used to being in that room and having some form of security with all the nurses, respiratory therapists and especially the machines beeping at the slightest move, alerting us of anything. Once we went home it was really just our instinct.

My daughter didn’t come home on oxygen, she was weaned a few days before we left the hospital, therefore I decided not to purchase any oxygen or heart rate monitor. To be honest the first few weeks consisted of actually looking at her to determine if she was breathing and making sure she was fed every 2-3 hours to continue her weight gain. Then again some of this may be the reality of many parents of a newborn to some extent and not only preemie specific. 

It depends on each preemie but for us we had several follow-up appointments lined up already at discharge. Just to name a few, we were referred to an ophthalmologist, pediatrician, neonatal follow-up clinic, audiology clinic, genetic, physiotherapy, occupational therapy, infant development and I’m sure I’m forgetting one or two.

I can honestly say that in term of managing all those specialist’s appointment, the first year was very challenging. I’m grateful that I was on maternity leave so work was not in the way and I could focus on finding the best schedule for us. On the bright side, I know now that it was more than necessary to be followed so closely after her rocky NICU stay. 

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In general, as parent, we look at milestones to see what our child is doing or not according to a certain age bracket. For our preemies those milestones are a bit different. Preemie first 2-3 years are calculated by “corrected or adjusted age”. From talking with fellow parents, I know how this can sometime be a source of concerns, however this journey has tough me to learn to celebrate every single milestone, from the smallest to the biggest. 

Lastly once out and about in public, it was always a question for us to either use her adjusted age or her chronological age (counting from the day she was born). Be prepared for looks if you use the chronological age and your baby appears “small” to the eye. I personally choose to only use her corrected age when talking with anybody that wasn’t family, friend or medical professional. I think this way it removed the necessity to explain anything that I wasn’t comfortable doing.  

At the end of the day, you do not have to explain anything you are not comfortable with. After discharge, the road may still be blurry for some of our preemies but on their own time they will get there.

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Six practices that helped me throughout the NICU journey

Day 33 in the NICU

This week will mark the 2021 World Prematurity Day, which takes place on November 17. For this occasion, I would like to reflect on our own journey. I will be sharing some of the things that helped me and my daughter to some extend while she was still in the NICU. Being a preemie parent is a really overwhelming experience to say the least. There is really no way to explain it except to live it. There is a lot of ups and down but also some joy in there just to see your little one fighting so hard. From this experience which lasted 120 days, here are some things that helped me:

1. Being physically present in the NICU

With all the specialists surrounding your baby; nurses, doctor, you can feel useless for a lack of a better word. Being physically there allowed me to know my daughter as much as possible while she was there. I was also able to learn about all her treatments and care. This eventually allowed me to do most of her care independently. I was able to be present during the doctor’s round and ask questions or raise concerns and feel as part of “the team”. 

2. Kangaroo care/reading to baby, talking to baby

I will elaborate more on kangaroo care in an upcoming post but it’s basically a method of holding a baby that involves skin-to-skin contact. It really helped me with bonding with my daughter. I was able to hold her for hours once she was more stable. There were some ups and down in the beginning but once she was comfortable it also helped her. While holding your baby you can also read to them, talk or even sing to them.

3. Choosing a primary nurse

This was definitely a game changer for us. I believe this is a practice that is available in a majority of NICU. Once you are familiar with your nurses, you can ask them (up to 4 nurses for us) to be your babies’ primary nurse. This way your primary nurses will always care for your baby once they are working. This allows some consistency and some peace of mind. Once I found my primaries as they are referred to, it was a bit easier. I can go more in details in a separate post but they were instrumental in my daughter’s discharge.

4. Taking some self-care time

This is not really a one size fits all. For me personally I couldn’t stay away from her side for too long. It was just easier for me mentally to be there as much as possible. Self-care may differ from a person to another. It can be something as small as leaving the hospital to get your hair done; which is something I did twice. I believe there is no right way to do it. As long as you can leave the room even for 30 minutes, recharge and come back.

5. Pumping /Breastfeeding

This is really a personal choice. I’m aware that not everyone is able to breastfeed or decides to do it for specific reasons. In my case since she wasn’t able to eat through the mouth until about 2-3 weeks before her discharge date, I tried to pump as much as possible and leave my milk in her fridge for her to have through her feeding tube. I had planned on breastfeeding but this was the closest thing to it so I made due with it. In all, always remember fed is best. I did have a time when she was in the NICU and I could not pump enough for her feeds; she was then supplemented with formula.

6. Prayers

The last but not the least, this was very instrumental for me. I’ve always been a Christian. However, this time took my faith to another dimension. It was really a test and prayers really helped me navigate through all the hurdles. All the difficulties didn’t magically disappear but it really helped me ease my mind and fight through all the emotions. 

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How is the prosthetic journey so far?

My first prosthesis

We are fairly new to this adventure (just a little over one year) but here is what I’ve learn so far or how I can encourage someone just starting on the prosthesis journey. 

Before the big day, there was so much apprehension of the unknown.

I knew shortly before she was discharged from the NICU that my daughter would have to be assess by a prosthetist to have the process started once she was about 1year old. 

The year leading up to it, I was always wondering about if and when she would be able to walk. But I guess as a parent you always worry about milestones; how will your child grow and be independent. I now know that independence means something different for each child at a different age. 

Appointment day… 

Bring a lot of snacks and entertainment. This appointment was quite long since there was a lot of talking by the specialist present. It was a lot about getting to know my daughter. In the room that day we had, a developmental pediatrician, a physiotherapist, an occupational therapist and the prosthetist. Each of them was involve in the conversation however, the prosthetist and physiotherapist were the one that were more relevant to me at that moment.  I got a run-down of all the steps and some of the expectations.

Bring a notepad with questions and space to write. I like to write on a piece of paper but if you prefer you can always use your phone. I did go in there with my list of questions. I had previously done an online research so I had some things that I needed clarity on. 

Don’t sweat it too much. Yes, it was a big day for us but I felt it was just another appointment in our list since my princess left the NICU. The “vibe” felt the same. It was a bunch of specialists giving us their input, asking questions about her etc… It was pretty straight forward, long and in all honesty quiet boring. 

Takeaways…

My biggest takeaways so far are that this journey is really a marathon not a sprint. There will be some expectations as with anything involving our kids. Looking back, I could have just gotten there with a blank slate and less expectation. Having a prosthesis doesn’t mean that your child will walk right away even with a few months. It’s still a process and it all depends on their readiness. 

In the beginning, my daughter could not even look at that leg. She was literally scared of it. But withing 3-4 days she was fine with. I just included in her little play area so she could see that it could be a “toy”. It did take some time for her to ask me to wear and see that this helped her stand on her feet. Toddler really have a mind of their own. 

Don’t forget, it’s really not a sprint, it’s a marathon. 

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A quick guide on amniotic band syndrome

What is amniotic band syndrome?

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According to the John Hopkins Medicine, amniotic band syndrome “can occur when the inner layer of the placenta, called the amnion, is damaged during pregnancy. If this happens, thin strands of tissue (amniotic bands) form inside the amnion. These fiber-like bands tangle around the developing fetus, restricting blood flow, thus affecting the growth of certain body parts. This can cause congenital deformities of limbs. In some cases, strands can tangle so tightly around the limbs of a fetus that they amputate them. Amniotic band syndrome is usually diagnosed at birth, but can sometimes be detected in the womb by ultrasound”.

In my daughter’s case it was first discovered during my 19th week ultrasound. As mentioned above the congenital deformities can take different forms. For our princess, she was born without a left foot below the knee. She also has two fused toes on her right leg and her three middle fingers on her right hand are fused and shorter. Which means that she only has a thumb and pinky that are full size.

How common is amniotic band syndrome?

Amniotic band syndrome affects about 1 out of every 1,200 to 15,000 live births. Doctors think it happens in the hand/fingers more often than in the foot/toes. 

Can it be “prevented”?

No, the exact cause of amniotic band syndrome is unknown. The exact reason that the amniotic sac tears or ruptures is not always known and researchers believe that it may happen as a random occurrence. However, there are some theories out there. 

What treatments are available?

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This depends on the type of deformity there is. In some cases, it is possible to have a utero fetal surgery where the doctors try to release constriction caused by the amniotic band before it can cause further damage. The success of fetal surgery depends on the degree of damage that has been caused by the amniotic band.  

Treatment after birth consists of plastic and reconstructive surgery, followed by physical and occupational therapy as required by the type of deformity. Prosthetics may also be recommended for children suffering from loss of limbs or limb functionality. 

In our case, my daughter has syndactyly because of it, which means that she has some fused fingers together. In this case, there is the possibility of plastic surgery to separate the fingers if necessary, for the child hand function. 

For her foot, the prosthetic is what is helping her walk and do all the activities a toddler her age does. 

On my next post, I will be taking yoou to our prosthetic journey thus far.

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The ultrasound that changed my life

Pexels by Daniel Danilyuk

March 4, 2019,

This was supposed to be an exciting day, I was going to have an ultrasound to know the gender of my baby. 

The day started like any other for me. I had taken a day off work to be able to attend my appointment. The ultrasound technician, was quite talkative so we were having a conversation just before starting.

As she was examining me, she seemed very quiet and by the look on her face I could tell that something was concerning. 

I was looking at the screen myself but to be honest I couldn’t really understand what I was seeing.  I was 19 weeks pregnant at that time, with an uneventful pregnancy except for common food aversions and nausea.

As some of you may know, ultrasound technicians are no supposed to tell you what they see on the screen, it needs to be confirmed by a doctor. When the doctor came in the room, she told me that on the ultrasound they were not seeing the babies’ left foot and that they could not see 5 fingers on her right hand and also that her spine seemed not fully closed or developed. 

Photo by Maurício Mascaro from Pexels

In all honesty, at that point it’s all a blur, I don’t remember what I tough, if I cried or was just motionless.

The next thing I remember is the doctor telling me that my assigned OBGYN was in the clinic at the moment and he would see me and talk to me. I have to mention that this was my first appointment with my OBGYN and this man will forever have a place in my heart. He talked with so much care, softness. He immediately said that he was going to call one of the lead Geneticist at another hospital so that he could elaborate on the findings and follow me as well from then on. He made the call right in front of me while I was in his office. I was booked to see the geneticist two days later. 

The geneticist was so compassionate and understanding of all my emotions throughout the whole process. He explained to me the findings and scheduled me several other ultrasounds to confirm again what they were seeing. He even called me one day on a Sunday afternoon to know how I was doing. The outcome of all the tests was still the same. He was able to tell me that he believed that my daughter had amniotic band syndrome and possibly spina bifida. 

As the pregnancy progress, let me tell you it was NOT easy, I shed a lot of tears, thinking about my daughter’s future, I relied on my family for support, I prayed like never before and this was the only things that really gave me some solace and kept me going. 

The journey was just starting. 

In my next post I will be elaborating more on amniotic band syndrome and what this meant for us.

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What happens in the NICU…stays in the NICU?

Photo by Anna Shvets from Pexels

The NICU is a scary place at first…or maybe it’s frightening all the time, dealing with all the uncertainties. 

One of the first things most medical professional told me in the beginning is that it will be “a rollercoaster”. At first it doesn’t really make sense. But this saying stuck with me all throughout the four month my daughter was there. Let me tell you that it does make a lot of sense. The first 72hours were crucial for us but it was also our “honeymoon phase”. 

Everything was going according to the plan. She was intubated shortly after birth to help her breathe since she could not do it on her own yet…

In my previous post, I had quickly touched on the NICU being overwhelming. That was exactly what I felt when we got there.  ALL the machines, ALL the tubes she was hooked up on were very scary. Especially since she was “beeping” ALL the time. At the slightest noise I was essentially up on my feet wondering what was happening. 

For parents or caregivers trying to navigate the NICU, don’t hesitate to ask questions, even the ones you think may not be the brightest. There is no such thing as this, you are not a specialist. The more you ask, the more knowledge you acquire. The nurses are a great resource. I can truly say that after that experience, I have another level of respect for nurses. We encountered more then 50 I would say who cared for my daughter and the vast majority of the encountered were positives. We met some great womens (there was only one male nurse in the unit at the time we were there).  

Some babies go through a  smooth ride; however, this was not our case. My princess went through a lot of ups and down. She had to fight two infections, one of them being more severe. This specific infection required her to be on antibiotic administered through a PICC line (peripherally inserted central catheter) for six weeks.  She went through withdrawal from painkillers she received to help her. This was probably one of the most difficult things to watch for me. Especially since she was still intubated at that time, meaning we could not hear her voice, I could just see the pain with no sound coming from her. 

As a parent I felt helpless, my daughter was so tiny, fighting so hard for her life every day in a box (really an incubator). What could I do? How could I help her? 

In the coming posts, I will elaborate more on what you can do to help your babies and ultimately yourself while they are in this place.  

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NICU…never heard of it?

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I may be a little technical here, but I realize that not everyone knows what an NICU is. I can say that before 2019 I had no idea how it worked and what to expect, let alone how it looked like. I didn’t have anybody in my immediate circle that went through this so it was a learning curve for me as well. I don’t want to assume that anybody reading this knows what I’m talking about. 

Before talking more about the NICU, here are some quick facts from the World Health Organization on prematurity:

  • Every year, an estimated 15 million babies are born preterm (before 37 completed weeks of gestation), and this number is rising.
  • Preterm birth complications are the leading cause of death among children under 5 years of age, responsible for approximately 1 million deaths in 2015 (1).
  • Three-quarters of these deaths could be prevented with current, cost-effective interventions.
  • Across 184 countries, the rate of preterm birth ranges from 5% to 18% of babies born.

For people not familiar with the acronym, NICU stands for Neonatal Intensive Care Unit. It’s a section in an hospital that provides care to sick or premature babies.

Prematurity also has subcategories based on the baby’s gestational age at birth. 

  • extremely preterm (less than 28 weeks)
  • very preterm (28 to 32 weeks)
  • moderate to late preterm (32 to 37 weeks)

 In my case, my daughter required time in the NICU because she was born extremely preterm (also referred to as a micro-preemie) at 25 weeks.

I know depending on the hospital the room setup can vary significantly. My daughter had a single room; which allowed me to have some type of privacy considering the circumstances. The rooms in my specific NICU had the incubator, a bench (pretty comfortable, spent many days and night there), a mini fridge (not for food but for milk or medication) and some rooms had a pullout chair that could fully extend as a bed. From my talk with other parents, I also know that some hospitals have a big room instead shared by a couple of babies and a curtain used for privacy.

You should note that the setup I just described is typical to North American NICUs.  

What can you expect there?

Before I get to the equipment, know that you will SANITIZE and wash your hands ALL the time. When I say all the time it’s really all day long if you spend long hours there. Before you enter the room, when you enter the room, before you hold your baby, after holding your baby or anytime you touch something such as phone, keys. 

If you ever find yourself in the NICU, you will encounter various machines and it can be very intimidating and overwhelming.

Just to name a few, here are only some of the ones that were used for my daughter throughout her stay:

  • apnea monitor
  • Arterial line
  • Bili light
  • Blood pressure monitor
  • cardiopulmonary monitor
  • Central line
  • CPAP
  • Feeding tube
  • Ventilator
  • Nasal Canula
  • NG tube
  • Incubator

You can find a great explanation of them and more here.

It may seem like a lot but trust me you get familiar with them eventually start recognizing them and learn their function.

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The journey begins…

Pregnancy is not always a linear road; this is something I learned a bit over two years ago. 

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April 10, 2019…This date will forever be engraved in my heart. It might sound cliché but this is the day my life changed. I was about 24 weeks pregnant, taking a nap after work in my bedroom. I woke up to some liquid on my bed. I checked and realized that I had not peed on myself. I took a breather and phone my sister to let her know that I needed a drive to the hospital. Thank God she lived close by and she was there within 20 minutes. 

Once we arrived at the hospital triage, they assessed me within the hour. The nurse that checked me initially told me that my water did not break and I should be on my way out soon but the doctor on call needed to assess me as well. Well that I was a relief, I just needed to wait for my discharge papers and would be on my way home.

Oh, I was wrong! Once the doctor assessed me, I got a totally different diagnosis. She told me that my water had indeed broken and I would not be able to go home. So technically she told me that I would be stuck there until I deliver since I had almost no water left and the risk of infection were too high for them to let me go home.

At that point I couldn’t process everything since it was going so fast. But in my head, I made a quick calculation and realise that I would be on hospital bed rest for a very long time. 

I settled in to my hospital room quiet nicely. I decided that I would keep working remotely, so I did for the next two days. 

If you were ever in a high-risk unit of hospital, you know that the nurses come in to monitor you quiet frequently, to listen to the baby’s heartbeat or to check your own vitals.

Fast forward to April 14, 2019. At my night monitoring, my nurse could tell that something wasn’t right, the baby’s heartbeat was going a lot faster than usual. She kept me on the monitor for seemed like hours and called a doctor just to get his input on my situation. Once the doctor examined me, he decided that it was best that I was transferred to the Labor and Delivery unit just to be on the safe side. 

On April 15, 2019, my daughter was born by emergency c-section at 25 weeks, weighing 610g.