Play in NICU (click here to read more)

The play is defined as any kind of freely chosen activity, intrinsically motivated, and personally directed. It is vital for physical and motor development, but also social, emotional and intellectual development.

Play in NICU might be challenging due to baby`s clinical state, which might not be suitable for doing some activities; due to distracting noises, the equipment connected to the baby, the regular procedures that the baby is undergoing or lack of space for keeping the toys. In our case, the play was an issue because Aurora and Victoria had chronic lung disease and they used most of their energy on breathing. However, we tried to stimulate them in a way that wasn’t too demanding and stressful for them.

Apart from talking and singing to them whenever it was possible, we made sure they also had the toys that were suitable for their age and also, recommended by the play therapist and occupational therapist — for example, sensory lights or musical instruments. We even used an application on the telephone for visual stimulation.

Aurora playing with the sensory lights provided by the hospital.

Our play sessions in Nicu represented a great time to bond with the girls, to see their psychological progress and to share smiles, which we enjoyed a lot. If the girls were awake at the same time and in a good mood, we use to put them together on a play mat and observe them, making sure the water from the tubing that belonged to the breathing machine, was not going into their nose.

Aurora and Victoria playing together

Sometimes, we use to put them next to each other in their bouncing chairs and entertain them by playing peek-a-boo, reading a story or show them different toys. We used to facilitate play by putting the girls in a comfortable position, for example making rolls for their head, so they felt their head safe, which also helped with the correction of their head shape. As you know, babies are at risk of plagiocephaly, because of their relatively soft skull.

Play session in NICU

When on the play mat, we use to roll a towel and put it around them to encourage movement, bringing hands together or touching their feet. In term and healthy baby, these things happen naturally, and the parent notices his baby already rolling over and putting his feet in the mouth. A premature infant instead, needs help with the smallest things to build up his mobility, strength and confidence, and play represents the best way to achieve these things.

Once Maria was allowed to visit her sisters, she used to bring her toys so they could play with them and to pretend to be a doctor and treating them. It was fascinating to see how play connects the children and helps them communicate. When she was around, Aurora and Victoria kept watching her and smile, showing they loved her presence.

Maria playing with Victoria

It is important to know that a premature or sick baby has his rhythm to play and parents should respect that and follow it, to make sure the baby is not overstimulated and distressed. Whenever the baby looks overtired, or I pain, he should receive the opportunity to rest and recover, until he shows he is ready to play again. Aurora and Victoria as well, had days when they just wanted to sleep, to be held, and not being interested in any toy or activity and we just listened to them.

Aurora had a period when she was continuously fed via an NJ tube because she got stuck from the breading point of view and doctors considered it would help her lungs if her tummy was empty and the possibility of vomits was reduced, which prevented the aspirations to her lung. The insertion of the NJ tube required a lot of attention, ability, and an X-ray to make sure it is in the right place. During that period, we have been extremely cautious with the way we moved or let Aurora play because nobody wanted her NJ tube to come out, and restricted at the same time by the feeding pump that was pushing the milk.

Aurora having Nj tube.

In conclusion, play in NICU is crucial, although sometimes it is so difficult to achieve. I found it upsetting and stressful to take care of so many tubes and wires; to make sure I do not pull something or harm the girls. I dreamt to the day when I could run in the park with them, let them roll over and lift them to the sky, without any restraint, without any impediment. I desperately wished that freedom, and when it came, it was such a relief.

Thank you for reading!

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Breastfeeding in NICU

Mother`s milk is like a “magic potion” that has a significant effect on baby’s immune system and development. It also represents the best way for a mother to transmit her love to the baby, to bond and to soothe him.

When a baby is born prematurely, a lot of these things change. The mother does not have the opportunity to put her baby to the breast, but instead, the baby is fed through a tube with a syringe. In my case, soon after Aurora and Victoria were born, I was given a syringe and asked to express by hand. I did not understand why it was like that, so I asked, and the midwife told me that in the first days after delivery, the quantity of milk is minimal. Therefore, expressing with a pump might make the precious drops colostrum, rich in vitamins and minerals, to get lost in the tubing of the expressing kit. I followed the instructions, and I regularly expressed to stimulate the lactation. Some moms with premature births might struggle because their body is still not ready for this step.

Expressing by the pump was such hard work. It was sorrowful not to have the girls at my chest. So what I did, was to take something that belonged to them, a muslin for example, and had it close during the expressing sessions. That was helping to stimulate the milk production. Some moms might try to look at the pictures with their babies. I was not able. Whenever I tried, I ended up crying seeing them so little and sick.

Victoria fed by her dad with the syringe

To be able to feed himself, a baby needs to synchronise the sucking, swallowing and breathing. This happens after week 32 of gestation and even later if the infant is facing breathing issues. Aurora and Victoria were fed by UVC and IV in the first days, and OG and NG tubes, once they were able to receive the milk I was expressing for them. It took a long time for them to have the tube out due to the respiratory support they needed.

Victoria being fed by UVC and IV in the first days.

Aurora fed by UVC in the first days

At UCLH, I use to express in the expressing room. There was space for four moms at a time, and usually, we use to share our stories and struggles and encourage each other. More common questions were: ”At how many weeks was your baby born?”, ”Do you have other kids?”, ”What do you do to produce milk?”, ”For how long are you in NICU?”. All the expressing kits were for one use only. That was to reduce the spread of possible infections. The pump was cleaned before and after use by the moms, and every day by the staff of the hospital. Nonrecyclable bottles were provided, and the milk was kept in the hospital’s fridge, labelled with the name and the expressing date and hour. The nurses use to keep the amount of fluid necessary to feed the babies in the refrigerator that was in the nursery, and the rest of the amount was stocked in the freezer.

Once transferred to Whittington Hospital,  Aurora and Victoria were put in the isolation room because of the virus they had, CMV. I use to express in the same place. There was a pump only for me and bottles at discretion. Also, I had the opportunity to sterilise the kits.

At home, I expressed with a manual pump, filling the bottles from the hospital. Because I had much milk, I use to put it in the freezer. The bottles were taking much space, and I also used the milk bags, easy to find in any pharmacy. The milk can stay frozen for six months at home, and three months at the hospital. I manage to produce it for almost, four months, for both Aurora and Victoria. Maybe I could do more, but travelling to the hospital, being under pressure and stressed all the time, waking up during the night, use to make me lose weight, energy and I became exhausted.

After the girls had all my milk, they had the formula. From the very beginning, they did not tolerate it well, so the team that took care of them changed many types of milk, until the dietitian decided they should have the amino acid formula. It is a kind of milk with very broken proteins, usually given in cases of allergy to cow’s milk. It has a horrible taste and smell. After they were one year old, we gradually changed the PURAMINO with a goats milk formula, called NANNYCARE. Initially to number 1, and after, number 2 and they still consuming it.

The amino-acid formula

The formula that Aurora and Victoria had been on after they turned 1 year old

I can not stress enough the importance of mother’s milk for a baby, moreover, for a premature infant. Preemies do not have a strong enough digestive system to tolerate the formula. Mom’s milk is easy to digest, protects the baby against bacterias and infections and makes him thrive better than any other food or supplement in the world.

Source: Pinterest

Sweet, sweet cuddle

Our first cuddle with Victoria and Aurora is unforgettable. Aurora was doing very well in her early days in NICU. Despite being so little, she was such a lovely baby extubated after one day, sucking on the dummy and complaining whenever she did not like something. She had her first cuddle with her daddy, snuggle and comfortable. Next days I had one too. It was a unique feeling having her on my chest, with my hands covering her entire body. I was so happy to have her and sad that she was so little.  Victoria instead was a bit poorer, but still beautiful with big eyes and much hair. She was still intubated and having the recession when breathing. We have been worried about her but hoped for the best. She also had a cuddle in the first days, and again, it was a particular moment. Maria, the big sister, could not wait to meet the babies. We were a bit hesitant about bringing her or not to the hospital, but her desire to see them won. Later on, she played with a baby toy at the nursery and had put it in a microwave toy saying that he needs to grow.

Our first two weeks at NICU represented a process of adaptation to the environment, to the many machines, wires and noises that were there.  We got used to everything, except to see our babies having painful procedures, such as blood gases, cannulation, inserting long lines or eye tests. In the beginning, I was not able to look until I realised that they need me to be there and hold my hand on them. Aurora used to cry, making quite sounds. Victoria was not able to. I could see the expression on her face and the tears. I always cried for both of them inside me. I kept asking myself how can they take it, what they feel and what they think about the people who use to do those procedures over and over again. However, I knew they were essential to keep them alive.

 

It is challenging to see your baby tiny, sick, not being able to take care of him and let it in the hospital when who had to leave. It the beginning you feel like you want to move to the hospital and be with your baby 24h a day until the reality hits you and you realise that you have other kids to take care of, that you have to go to work sometimes, and that is not even indicated to be always there. What my husband and I did, was working in a team, sharing the responsibilities, and doing our best when in hospital. I remember one of the moms who already spent much time in NICU, told me that the most important thing I could do is to get to know my babies. This way I would be able to follow their progress, notice any changes that could be a sign of something going wrong and help to prevent it. Despite doing a fantastic job, doctors and nurses will have to change shift, but parents are there every day.

Other advise that we received was to take care of our self and ask for help when needed. It is imperative that parents do not forget they are human beings and try to sleep, eat and drink. Every journey throughout NICU is different. Some babies stay longer, some shorter, and parents need to be with their babies. We stayed in NICU 233 days with Victoria, and 267 with Aurora. In this time, one of us was every day at the hospital. Moreover, when home, the first thing in the morning and the last in the evening, was to call the hospital and ask how are they doing. We used all our physical and psychical resources, and we were not allowed to get unwell.

Help is a critical word in the journey of prematurity. Parents should ask for any help they need. Weather is breastfeeding, language difficulties or psychical support. That is because they should use all their energy to help their baby thrive, not to struggle with any other things. Moreover, people who know parents with premature babies can help them in different ways. Weather is taking care of their other kids, dropping them off or picking up from school, sharing their dinner or just encouraging them. Everything is welcomed and is one worry less to know that you can appeal to somebody when you get stuck. What they should not do, in my opinion, is ask when the baby will come home. Nobody can predict this and asking it all the time makes the parents frustrated.

My husband also has some thought for parents with premature babies, apart from getting involved in their care, to collaborate with hospital staff — also, the most important not to lose their faith in God as there is where the real help comes.

I am very curious how was your first cuddle with your baby, whether he was premature or term baby. Leave a comment with your special moments. Please, make sure your comment is friendly and does not offend anyone.

Thank you for reading!