Month: November 2021

NICU/

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. 

pixabay

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.

NICU/

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. 

Amniotic Band Syndrome/

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.