I’ve been really struggling to bond with my rainbow baby recently and it got me thinking. It didn’t make sense to me that I bonded better with my daughter Silver Rose who was in NICU where I only got one hug in sixteen days yet when I have a healthy baby that I can have unlimited cuddles with, I seem to be finding it harder to bond.
I think I’ve identified the major difference however. With Silver the best I could expect was an extremely sick baby in NICU, knowing there was a high chance she would not live past possibly a few hours if that. I had a long time to process that, from being told at twenty weeks she was sick, to delivery via emergency C section at thirty two weeks. My mind set in that pregnancy was very different. I refused to be defeated and decided to stay positive despite such an ominous reality looming overhead constantly.
When she was born every day was a bonus and a lot of bonding experiences we treasured because we never expected to be able to do any of them. Even when expecting a NICU baby we were completely unaware of just how involved we could be in her care. The first day when we were asked if we wanted to change her nappy was a delightful surprise even if we were then completely terrified of changing the nappy of an 870g baby!
Of course, our circumstances were very unique and I am sure there are many babies who thrive in NICU and SCBU and grow to be healthy children. I really don’t want my story of loss to scare other parents and inevitably hold you back from bonding to protect yourself from the risk of pain. Unfortunately we were always aware the odds were not in our favour and perhaps that did help force us to bond but I do believe every parent in NICU has so many wonderful opportunities to bond and I’d love to share my favourites below.
Firstly, and it might seem an obvious one but simply stroking your baby and touching them. I was completely shocked to find that even in NICU we were still able to stroke and touch Silver at our own free will through the two hand holes on either side of the incubator. I can’t tell you how invaluable this simple touch was to me, memorising her features and how she felt. Now that she is no longer with us, I treasure the fact I still remember exactly what it felt like when she would grasp her tiny little hand around my finger.
I treasure the memory of stroking her head and remembering just how warm it always was due to the temperature and humidity settings of the incubator. I loved how soft her golden hair was and often enjoyed stroking her head whenever she wasn’t wearing her hat. We also were encouraged to do her physio exercises for her foot which had been bent backwards due to being so cramped with no amniotic fluid which was a nice way to both help her out and bond at the same time.
One thing the nurses encouraged us to do was place one hand gently around the top of her head and one around her feet to give her a sense of security. A way to remind her of the familiarity and security the confines of the womb had once provided. They also suggested resting one hand around her head and one hand gently placed over her body, also providing the same sort of comfort. This was particularly useful whenever she required any heel pricks or blood tests as it enabled her to have the comfort of familiar touch and sound whilst provided us with a sense of satisfaction that we were still able to provide her with emotional comfort.
Another thing you have to consider is that most newborns crave touch. Health professionals now emphasise how you cannot spoil a baby because it is actually vitally important for them. They have spent nine months somewhere that is warm, dark and cramped. Coming into the real world with bright lights, loud noises and being expected to sleep alone on their backs can be overwhelming. This is even harder when in an incubator, so the more often you can provide that much needed touch will not only help your baby feel relaxed and therefor encourage their recovery but it is so vitally important for bonding in such a difficult circumstance.
Something that goes hand in hand with touch is sound. It is so important for your baby to hear your voice. NICU incubators are alien environments and providing your baby with familiarity can only help in their emotional wellbeing during what can be a rather traumatic experience for all involved. They will already be familiar with your voice and find comfort when they hear this sound soothing them.
Of course this can also provide you with comfort and allow you to feel connected with your baby. It allows you to feel you are still able to be a caring parent which provides emotional support. I personally feel sometimes saying things aloud helps to connect the dots, so telling your baby how loved they are and how beautiful they are despite all their tubes and wires can help you too to believe the things you are telling your baby. It can be helpful to say positive affirmations aloud for your baby to hear and can keep your moral high and in good spirits.
I honestly regret that I didn’t speak to Silver enough. I spent so much time sat next to her incubator but more often than not I simply sat quietly and looked upon her in awe. I’m not saying that sometimes that isn’t a lovely way to spend time with your NICU baby but I can sit and look in awe at pictures of her as much as I want now, one thing I can no longer do is talk to her and know she is listening and hearing my voice.
Personally, one main conversation I had with her that stands out in my memory is the day before she passed away and I had my first ever cuddle with her. I actually felt slightly awkward and wasn’t sure what to say, but I decided to tell her more about our plans to go on a family holiday to Disney in a few years’ time. I felt so happy telling her about this and sharing with her the exciting things I was looking forward to doing together. It was a special conversation and I do treasure that moment but naturally I am also broken that I had made a promise to take her to Disney and I am no longer able to upkeep that promise. Someone said to me after she passed away that she could now go to Disney whenever she wanted and I will admit that does give me some comfort.
Talking about that cuddle, one thing that both parents can do (dependant on the health of your baby) is kangaroo care. Silver kept having pneumothorax’s (punctures in her lung leading to air leaking into her chest) which required painful chest drains. Because of this she was never usually well enough to have proper cuddles. I was very lucky that the day before she passed away, she hadn’t had chest drains in for a couple of days prior so was pain free and thriving allowing for that very special cuddle.
Let me explain kangaroo care. This is basically skin to skin with your NICU baby. It has been proven to have many benefits for both parents and baby. Babies have been shown to thrive with kangaroo care, regulating their temperature more effectively, sleeping better, gaining weight, improved breathing and a more stable heart rate. For a mother this can also really help with milk production and encourages baby to breastfeed but for both parents it has been proven invaluable in terms of bonding.
Don’t panic if your baby is too sick at the moment to have cuddles, you can still have a different type of cuddle. One thing we got to do a couple of times was bring down the side of her incubator and the tray her bed laid on could actually come completely out. This allowed us to cuddle her as she laid in the comfort of her nest and give unlimited kisses. We were completely shocked that this was even an option and overjoyed to get this time to bond with her where she was not behind a pane of plastic!
I actually had my fondest memories of the time with Silver when she had come out on her tray. One time in particular she was very much wide awake and despite her size and gestation was a very alert, observant baby. The part that stands out in my memory however was when she repeatedly would go cross eyed and despite her being very sick and the situation being less than ideal me and my husband couldn’t help but laugh out loud. It was so nice to have those moments where we were able to completely forget the situation and that she was ill and were simply able to enjoy her as an adorable new born.
Another thing we were surprised to be able to do which I encourage other parents to partake in was Silver’s cares. This was done every six hours and consisted of nappy change, mouth care and her physio exercises. We couldn’t believe we were trusted to change her nappy, knowing how tiny and fragile she was. At first, we were very timid and it took some getting used to, working around several wires but it helped normalise the situation. It took a very medicalised environment and gave us some normality as parents as we were involved in all aspects which we could be.
I can’t tell you how much a difference it also makes in terms of the time you spend by your child’s bedside. I found it could be quite awkward at times as there wasn’t much we could do and a lot of the time was just spent sat next to her incubator watching her as we chatted among ourselves. Hence we threw ourselves into every opportunity which allowed us to be hands on and involved, which not only helped with the bonding but also broke up the time and made it more enjoyable.
A special part of her cares that we also did was mouth care. This was where we dipped cotton buds into my expressed milk and placed it in her mouth so she could suck and taste my milk. She was being fed via a tube that was actually going in via her belly button but this allowed her to enjoy the pleasure of taste and was simply a way of giving her an enjoyable experience after her nappy change. This was particularly rewarding for me as I had been notoriously expressing day and night since she was born, however due to her having bowel problems they had had to stop feeding her my milk and revert back to an IV drip. So this was a way of still putting it to good use without it effecting her bowels. Mouth care was also something Fabian could do and allowed him to have that pleasant experience with her and for her to have a positive association with our voices.
I truly advocate expressing breast milk too if you can. I know you may think this is only something for the mum to do but I honestly think this is a team effort. Despite me expressing large amounts I did actually find it quite difficult emotionally, especially when I was sat alone during the night because I was engorged and felt quite isolated as Fabian slept and there was no baby in sight. It is a labour of love and success is more likely with a good support network. Obviously this blog is about bonding and I feel the reason for mentioning this particular point is the rewarding feeling you get when your expressing pays off. When your teamwork and hard work is acknowledged by nurses and midwives and you see your milk being fed to your baby. The knowledge your baby is thriving due to the hard work you have put in is a truly rewarding experience.
I really think in a situation such as having a NICU baby you need to try and normalise your situation as much as possible. Do the things that make you feel like a parent still, such as the nappy changes and cuddles when health permits. Another thing I think is really important which me and Fabian would almost always do was to attend the daily ward rounds. I think our NICU would do three a day and we would aim to attend two of them. It really helped us feel a part of Silver’s care and the doctors were fantastic at including us in the conversation with the other medical professionals as they made a plan for the next twelve hours of care.
This might seem like an odd one but at a time when it can feel as though you can barely do anything with your baby this can be a lovely way of feeling you are contributing. Personally when I was pregnant with Silver and I knew she was unwell I crocheted an octopus. This is something a lot of people do for babies in special care as the tentacles mimic an umbilical cord and therefor offer the baby comfort. Unfortunately, with Silver being in NICU and not SCBU they did not allow her octopus in her incubator due to risk of contaminating her sterile environment.
A few other examples of what you could create is clothes for your baby. I’m personally not particularly skilled in crochet but found a simple hat was very achievable whilst following a YouTube tutorial and although I didn’t make any for Silver it was something I did in my last pregnancy for Leilani.
For Silver I instead created her two milestone cards as I had not purchased any for her due to the knowledge of her being so sick. This gave me some focus during the difficult time but also was something I was able to do by her bedside. I distinctly remember making her two week one late that night and another mum from the same room kindly waited for me to finish so we could walk back to our charity accommodation together in the snow (it was past midnight). The nurse was very kind at helping me get the perfect picture that night too and lowered the side of the incubator down so I could take the photo without it being distorted through plastic.
There seems to be a common theme with bonding, a lot of it relates to our senses. Another which is so important for both parents and baby is scent. When Silver was born we were immediately gifted a mini boo set from Tiny Lives. You can also purchase these here. They are basically a pair of fabric toys that you can use to exchange scents. This is something both mum and dad can be involved in by taking it in turns and every few hours swapping this with the one in the incubator.
This is known to be extremely beneficial to help encourage milk production when skin to skin is not possible. I didn’t have any supply issues with Silver but I did with Leilani and so the hospital gave me two knitted squares (Another great craft idea) which have the same effect.
I would often keep the mini boo tucked into my bra with Silver and allowed a couple drops of my milk onto it too to ensure she could smell my scent and find comfort and familiarity from it within her incubator. We would then swap every few hours and as I said, at times Fabian would tuck it into his shirt too so he too could bond with her.
I have one major regret from the time spent with Silver. The first time we ever read a book to Silver was the book that came in the memory box we were provided with after she had passed away. Don’t leave it until it’s too late like we did. I don’t want to sound morbid at all and I’m not saying all babies pass away in NICU at all, because there is so many amazing miracle babies and fighters out there. What I am saying is that we became complacent, we forgot that our baby was in intensive care and still very much fragile. We took the time for granted and it never occurred to us to do something as simple and normal as reading her a book.
We spent so much time simply sitting next to her, watching her sleep and now I just wish we could have turned it into an even more positive experience where we felt like normal parents with a new born. Leilani is five weeks old now and I have already made sure to read her her first book – Elmer the elephant. I thought it was an appropriate book for a rainbow baby which tied in her big sister Silver whose special animal was an elephant.
I hope this blog post has given you an insight into how we personally bonded with Silver whilst she was in NICU for her sixteen precious days. I cannot emphasise enough how important it is to also take care of yourself. Spend as much time with your baby as possible but at the same time don’t neglect yourself to the point you are by their side through obligation and not actually enjoying the time with them. It can be as simple as taking the time to go for a hot bath or a walk in the fresh air.
Having a baby in NICU you can sometimes find yourself wrapped up in a bubble. I know the first time I left the hospital I felt shocked that life outside still continued and yet my entire life revolved around constant hand washing, expressing milk and sitting in a room full of beeping machines. It can be an intense multisensory experience and it’s important to be mindful of self care to have the best possible experience.
If you do find it difficult bonding with your NICU baby I highly recommend speaking with the nurses. I know it is not something they are trained in but they will have a lot of experience seeing families go through similar circumstances and may have other suggestions of how you could develop a bond with your little fighter. Each hospital is different but we were also lucky to have the support of a clinical psychologist provided by the charity Tiny Lives which is only based at RVI Newcastle.
I want to send love and positivity out there to all the NICU and SCBU parents and families out there and praying for your little fighter. I hope you enjoy and immerse yourself in bonding with your baby and feel a deep loving connection. Each and every moment is a blessing and I think we are all so lucky to call ourselves parents to the most inspiring little babies who fight so hard.
Until next time,