It was nothing like the way I had imagined it. Here I was, a minute after giving birth to my firstborn son, and he was being taken from me and rushed to the NICU to be intubated, poked, and prodded. Lincoln was born with a condition called Congenital Diaphragmatic Hernia and had to spend two weeks in the children’s hospital NICU as well as another month and a half in recovery. It was scary, challenging, and sometimes totally frustrating, but throughout that experience I learned that it IS possible to provide your hospitalized child with sensitive, holistic, and attachment based parenting. Here are some of the most important things I picked up during our time there.
Note: I am in NO WAY advocating ignoring the advice of your child’s doctors and nurses. I am simply hoping to provide some tips to other mammas going through a similar experience to what we went through. Just because your baby needs some specialized care DOES NOT mean your role as his mother and primary caregiver is in any way less important than it would be for a “normal” newborn. Those doctors are experts in their particular fields and should be respected as such, but only you are an expert in your baby, and therefore only you may be able to advocate for those things he needs that can’t just be checked off his chart.
One of the most surprising things to me was how often the NICU nurses would tell me I could leave. I’m sure they were just trying to make me feel comfortable that they would be there to care for my son, but after the fourth or fifth time one of them told me to go take a nap or – even more strangely – to go out to dinner with my husband, it was hard not to get irritated. If I was at home with my newborn baby I would not even be considering leaving him with strangers while I slept or went out to eat! Just because these particular strangers have medical training does not make me feel any differently!
Your baby knows you; the sound of your voice, your smell, the aura that you give off. He or she needs to feel your presence in order to relax and dedicate all energy toward healing. Talk or sing to her. You might not be able to hold your little one right away (I didn’t get to hold my son until he was a full week old. Torturous!), but if you can, touch him. I remember sitting up many hours during the night just stroking his soft little head and kissing his cheeks and watching as he slowly relaxed. Being a constant presence also allows you to get to know the people providing medical care to your precious babe. I found that the more you get to know your child’s nurses, the more likely they are to include you in his care and possibly even bend the rules a little. Which brings me to my next point.
Doctors and nurses are busy people who work long hours and care for many patients and families throughout their workweek. It is pretty unlikely that they are going to take time out of their schedule to ask you if you would like to change a diaper yourself, or teach you what each wire/tube is for and what each number on the screen means. Sure, some might, but more often than not you are going to have to ask!
We were told during my pregnancy that from what they could tell via ultrasound, Lincoln’s CDH was not very pronounced and really a “best case scenario” for a baby like him. This was confirmed after he was born and we were given very good odds on his ability to recover quickly. Yet despite that, he was still treated with the standard protocol for any CDH baby they see in the NICU. This meant that he was put on a morphine drip at a pretty high dose until we expressed our discomfort with him getting so much pain medication and asked if there was any other solution. We were able to compromise with his medical team to lower his drip dose and provide boosters sporadically if his situation changed or he started to seem like he was hurting. He received a lot less morphine this way and, since we were with him all the time, we could monitor his needs to ensure he was never suffering unnecessarily. Lesson learned? If there is something you are confused about, uncomfortable with, or just want to know, it never hurts to ask one of the staff to help you. This is part of their job and they are usually happy to do it.
Do your research.
Although no amount of online or library book research is going to provide you with the equivalent of a medical degree, you may be surprised how much information is out there about your baby’s condition. Hospitals have strict procedures and generally the staff is trained to treat problems in a specific way without room for considering individual circumstance or other effective remedies. For example, intubated babies usually have pretty dry mouths and the nurses will take a packet of gel and swab the mouth down a few times a day. What is the gel? Despite its common use in the hospital, no one we asked really seemed to know what was in it. So I looked it up to see what I could find (still no conclusive answers about what that stuff is..) and came across the amazing alternative of performing baby’s oral care with my own colostrum on the swab instead! This has the added benefit of giving your little one a dose of the precious breastmilk antibodies that are even more important to a sick baby. We insisted on doing it this way and the nurses were very accommodating. (Again, I am NOT saying to ignore your baby’s doctors. But they have no room for flexibility in their procedures and if there is a more natural, less invasive treatment out there, you are probably going to have to find it yourself.)
Respond to baby’s needs however possible.
When a baby has a condition that is keeping him or her in the hospital for a while, it can be hard for parents not to focus all their attention and energy on the medical issue. After all, you are in a very clinical environment, meeting with multiple types of professionals every day who don’t know your child but have a lot to say about his disease. Add to that the fact that many of these babies have restrictions on feeding, movement, or stimulation, and you have the exact kind of situation where a little one’s non medical needs can go unmet. While it is important to do some research and speak with your child’s doctors about treatment issues, one of the best things you can do as a parent of a NICU baby is find ways to meet their more typical requirements. You may have to get creative here! When my son was in the hospital, he was not allowed to nurse for the first month and then for only a few minutes at scheduled intervals, increasing at a painfully slow pace. Sure he was getting fed through his IV and then his NG tube, but problem was he had a strong sucking reflex just like most infants do, and it was frustrating him when he couldn’t seek that source of comfort. Despite my previous thought that I would not use a pacifier for my kid, in this situation I decided to do just that. When he would fuss and root like he wanted to nurse, I would hold him to my breast and offer him his binky. He snuggled into my chest and usually drifted right off to sleep in my arms. It was lovely and beautiful, and surely the next best thing to what he really wanted but couldn’t have. If your baby needs some snuggles but is still hooked up to too many machines to be held, fold down the side of the crib and get in there as close as possible! You may not always be able to give her exactly what she would want in optimal circumstances, but you absolutely can satisfy her needs!
Pump your breastmilk if you’re able.
This one might seem obvious, but when your baby is in the NICU and the normal pattern of responsive care has been interrupted, you might start thinking that there is not much you can do to provide for your child. This is not the case! Your baby will not be sick forever. Sooner or later he will be ready to feed and you want to have a good supply of milk available for him. Whether that milk is going down a feeding tube or you are lucky enough to be able to start breastfeeding right away, if you aren’t pumping during the time your baby isn’t receiving milk then there won’t be any milk there when he needs it. Breastmilk has many amazing nutritive and healing properties for all babies, but it is so, SO important for those babies whose health and growth has already been compromised in some way to receive the best possible source of nourishment to assist in their recoveries. Pumping round the clock sucks, trust me I know, but it is the most loving sacrifice of your time you can make for your NICU baby.
Accept the hand you’ve been dealt.
This one was probably the hardest for my husband and I. We are both people who like to be in control (hello pitta dosha) and those few months after our son was born were a very hard lesson in what it means to be essentially helpless. Did I want my sweet baby to be pumped full of pain meds and IV nutrition? Hell no! But am I thankful every single day that hospitals with NICUs and surgeons, machines and drugs exist? Absolutely! Because before they did, people who were born with CDH didn’t make it. Still, it is easy to get lost in a spiral of what ifs. What if we caused this somehow? What if we had done XYZ differently? If we had been kinder/smarter/better people would this still have happened? I could go on and on, and I’m sure a lot of you can relate, but at the end of the day playing the blame game and harboring resentment toward the universe is not going to change your situation. Perpetuating a negative attitude is certainly not going to help your baby heal and in fact, might even slow the process. I believe that everything happens for a reason. Sometimes we are not blessed with the knowledge of what that reason might be, but it is there nonetheless. Though challenging and even seemingly unfair, these are the moments where we have no choice but to learn how to surrender.
Are you a current or former NICU mamma? Any other tips to share? Please feel welcome to share your experiences in the comments below.