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Surviving Your Baby's Life-Saving Surgery

 

 

When our youngest was just three weeks old, he suddenly developed a high fever, accompanied by high-pitched crying. In all my years of mothering our other 5 babies, this had never happened. I became worried about possible infection, so I sadly left our babymoon nest and headed for ER. By the time he was checked over by a pediatrician his temperature had fallen, but we were admitted nevertheless, for observation. The following 4 days were some of the most difficult in my life; after having an ecstatic freebirth at home, suddenly we were institutionalized and forbidden to leave the compound, on threat of social services.

Since I became a mother, I’ve encountered countless parents who like us, found themselves stuck in the hospital for longer than needed, subjected to all sorts of unnecessary, invasive, painful tests, and been under tremendous pressure to compromise their instinctive parenting practices for no reason other than the hospital’s protocols and the staff’s convenience. I have also encountered many, many parents who have had to stay in the hospital for an extended time while their baby underwent very necessary and life-saving surgery.

Whether you’ve had this experience already, or life has such challenges in store for you further down your parenting road, or someone you know is going through such a trial, I hope the shared experience you find here will be useful to you.

Before you go to the Hospital

Even if you leave your home in a rush, take something small with you to focus on when you feel fearful, alone, and out of place during your hospital stay. It could be a picture of your family, an icon, statue, or little shrine, something that smells like home (I found tremendous comfort borrowing my face in my husband’s tee shirt), your favorite lip balm or hand cream, a letter from a loved one, etc.

Just as essential is to take with you your strength and common sense. Whether you’re a first time parent or a seasoned one, be prepared to have your very core challenged. Hospitals are built on the premises of efficiency and efficacy, not with the patient’s holistic well-being in mind. Upon entering a hospital, you enter the timelessness of humming machines, artificially lit rooms and corridors without sense of sun or moon, juxtaposed with the incredibly fragmented time of checkups, tests and interrupted sleep. Because you are on someone else’s territory and must adhere to the institution’s rules and regulations, any notion of gentle, respectful parenting you have may be challenged and sacrificed to the unceasing hospital routine. Remember who you are and the kind of parent you aspire to be. Don’t doubt your strength and authority as your own child’s expert.

 While you’re in the Hospital

What you can do to help your little one while in the hospital varies greatly from case to case, and from hospital to hospital.

I’ve known a couple whose baby was born prematurely and needed surgery at one week. It was hospital policy to keep such babies in incubators at all times with little physical contact. These amazing parents, armed with information and knowledge about Kangaroo Care, insisted they keep their tiny one skin to skin for as many hours a day as possible. The nurses watched in awe as the parents took turns keeping their baby on their chests, and fondly nicknamed the father “Kangaroo Man”.

The hospital we found ourselves in had a no-parent policy during the very painful spinal tap procedure our baby boy underwent, twice. I fought tooth and nail to be present for this; holding his hand and singing in his ear while he was pinned down and screaming with pain, the whole time tears streaming down my own face. I also had to insist on holding him whenever he was checked or tested, and wore him in a sling all the hours we were awake.

Petra, whose newborn son underwent life-saving surgery for 2 holes in his heart, found invaluable comfort in her community’s support: “On the way to the hospital we called Zita (our doula) who came to support us yet again. Words cannot describe the fear, the terror, the panic and distress... I contacted everybody I knew who could help me express my milk for Ruben as I wasn’t allowed to feed him anymore. I’d never been able to express before but with the support from friends I managed. When Ruben was intubated I had to leave the room. I kissed my boy goodbye and prayed I would see him again alive. As we sat down in the other room I broke down and cried like I’d never cried before. I didn’t know if I would see my baby alive again. The exhaustion finally took over and I fell asleep sobbing, curled up in Zita’s arms.”

Mariamni, whose newborn son Makary underwent surgery for posterior urethral valve blockage, relates: “Most helpful of all were our support people who cooked us meals and looked after the other children. When you have several children you feel so torn, and it was really important to me to be able to be with Makary as much as possible but to feel the other children were ok and supported. The support that enabled me to just BE in the hospital enabled me to have time with my husband and the baby, talking through the clinical picture with him, making decisions, praying, cuddling each other. We really needed that freedom as a couple to focus on the baby TOGETHER. It was an amazing time for us and our marriage.”

Other things Mariamni felt were helpful:

  • Pumping milk and knitting for him. This gave me something to do when I could do nothing else (not even hold my baby.) Sitting by his bed the whole time, holding his little hand, talking to him.
  • Personalizing his space, putting up icons, cards, and get well messages his brothers had made and written, photos of the family, a teddy.
  • Being able to have the whole family in the hospital and have time with each of the other children at his bedside.
  • Skin-to-skin time when it was possible (and it is possible even with baby on a ventilator. Ask for nursing staff for help to move your baby.)
  • Talking with other parents on the NICU.
  • Asking medical staff to explain things, draw you pictures, asking questions, asking for a bigger picture (i.e., where your situation first into a broader spectrum.)
  • Sleeping whenever you can.

Kakia, whose 6 week old daughter was admitted for life-saving open heart surgery, found the following aspects of the hopsital’s infrastructure incredibly helpful:

  • The cardiac Intensive Car Unit (ICU) was accessible to the parents at any time of the day or night so they could stroke their daughter, sing to her, and pray over her.
  • A lactation consultant was available on demand to help with any breastfeeding issues, such as positioning baby on the breast with all the tubes still attached, using the breast pump, advice for breastfeeding post-surgery, etc.
  • The hospital provided a room near the ICU with top of the line equipment where breastfeeding moms could pump in a relaxed area, comfortable sleeping quarters next to the ICU for them, all their meals for free.
  • In the kitchenette for the ICU families, there was a designated refrigerator for storing pumped breastmilk while baby was under sedation.

In the days surrounding their daughter’s surgery, having friends, family, volunteers and staff keeping them company was such a blessing. Kakia relates: “ What really made Carolyn’s hospitalization less scary and scarring for us was the synergy of support from wonderful people. Being alone is scary. People were checking on us all the time. The nurses talked to us about our daughter using her name; she was not just another tiny human plugged in on beeping monitors or a number on the charts. They kept referring to all the beautiful things we will be doing with her once we get out of the hospital. That gave us perspective and a sense of normalcy. Volunteers would check on us and the baby, take us down to the cafeteria for lunch and keep us connected with the outside world.”

When you get home from the hospital

No matter the length of your stay and the procedures or surgery your baby went through, it’s fair to assume he/she has been traumatized to some extent. This should be considered a given (rather than a source of guilt), so you can help your little one heal. Babies are so very sensitive: they feel pain more acutely than older children and adults and can have anxiety from even the shortest separation because it’s perceived as abandonment.

“Five weeks of pumping; Eight weeks of ups and downs in hospital; Endless cups of coffee and conversations with other parents in the PICU (Pediatric Intensive Care Unit) kitchen. Over 100 bottles of milk pumped. Too many tears. So much fear. But we made it. I celebrated silently as I sat down in my room, lifted my shirt and Ruben latched on: A silent tear of relief and a smile on my lips. Now he could really start healing. It was time for our emotional healing to begin…” (Petra)

 

Holistic Parenting Magazine

 

Babymoon

Consider continuing your babymoon, if at all possible. Have others bring you food, let the housekeeping go, snuggle up with your baby in bed for at least a week. Drink lots of water and herbal tea and focus on making up for lost bonding time with your baby. If there are breastfeeding problems get help, and work on building up your milk supply again. Petra relates: “I spent the first week making up for our babymoon that had been cut short. I spend most days in bed with him, feeding and building up my supply again. I carried him in his new sling, which friends had made for me. We cried and we cuddled and stayed up late together”.

Homeopathy

When we returned from the hospital, my bright eyed baby boy had lost his sparkle. When his Daddy and I tried to make eye contact he returned our gaze with a blank look, and I felt as if his soul was slipping away. He was still carried all day in a sling by members of his family tribe, and slept at night in the crook of my arm. I took him to our homeopath who treated him for pain and grief… Grief? For a 1 month old? you may be thinking. It turns out the spinal taps were overwhelmingly painful for him, the strange smells, sounds and sights of the hospital environment just too much for his little soul, and he began to shut down in order to cope. I am forever grateful to our homeopath who treated him, and within 10 days he was back to his alert, interactive self, giving good eye contact, and smiling for the first time since the day he was born.

Craniosacral Therapy

Craniosacral Therapy is a non-invasive method of working on the body started by American osteopath William Garner Sutherland in the early 1900s, involving the muscular-skeletal system, cerebrospinal fluid, dural membrane, connective tissues, autonomic nervous system and fluids. All newborns can benefit from craniosacral therapy, especially if they had a surgical or instrumental birth. After your baby’s necessary surgery or procedure, you may notice she cocks her head to one side, experiences difficulty breastfeeding, cries a lot and generally seems uncomfortable. Even when there are no obvious symptoms, it’s very probable that at some point of her hospital stay, her body position, stress levels, and acute pain got her misaligned in some way. It’s better to treat and heal her than to resort to ‘self-soothing’, ‘sleep training’, and other heart-aching methods to make your baby settle; Restoring balance to the nervous system has a remarkable effect on a baby’s well-being: she will be much calmer once she is pain-free and comfortable once again.

Massage

We all know touch is vital for babies. It’s crucial to be in constant physical contact after your little one has been in an incubator, or has spent prolonged times away from you during your hospital stay. A wonderful way to soothe and re-connect is with massage. You don’t have to be a specialist to give a tender massage to your baby: all you need is a base oil (such as almond oil), a couple of drops of essential oil (such as lavender) and the ability to rub and caress her feet slowly and rhythmically. Our babies loved foot massage so much, they would get excited as soon as I took my oils out, in anticipation!

Write about it

Even if you never share your experiences, it can be tremendously helpful and healing to write them down. Putting our thoughts and feelings on paper help us make sense of what happened. You’ll probably feel some sense of relief after unloading all the painful experiences. When you feel ready, consider sharing your story so others can learn from your experiences and take inspiration from your triumphs. “I’ve found it really helpful to look back and think about the positive things from that time: the first time I held him since he was born, the first time I was able to put him to my breast.  It was very special when he came off the ventilator, simply amazing seeing him take his own breaths, it was a really joyful moment seeing his face properly when it wasn’t stuffed so full of tubes.” (Mariamni)

Talk about it

Don’t keep your feelings bottled up. Talk to a trusted friend or relative, to your midwife or doula. Talk to someone who’s been through a similar experience;  You will find that you’re not alone! The most important thing IS that you have a healthy baby, but this fact doesn’t (and cannot) erase your harrowing experience nor any guilt, frustration, bitterness, and angst you’ve felt on the way. People who dismiss the process by looking only to the result (we’ve all heard the classic ‘it doesn’t matter what kind of birth you had because you have a healthy baby!’) aren’t willing to open up to your pain and really listen.

If you find yourself reliving your traumatic experience in your thoughts, having nightmares and flashbacks, avoiding contact with others, feeling detached and isolated, or feeling dissociated with your baby, seek help from a psychotherapist or counselor. It’s possible you’re suffering from Post Traumatic Stress Disorder.

Activism

During our hospital stay, I was bullied by a couple of nurses, who would appear during the night as I slept with my precious babe on my chest to inform me that I would suffocate my baby if I didn’t put him in the metal cage-like hospital crib to sleep. If he hadn’t been my 6th baby, I probably would have buckled, but in this case, I didn’t budge an inch! However, this kind of bullying was so unpleasant and I wish I had found the time to write a letter of complaint to the hospital once we were safely home (and send them some sound information about the benefits of co-sleeping). I learned afterwards that these particular matrons had bullied many women before me and probably continue to do so.

When Petra’s baby developed chylothorax (as a result of open heart surgery) and had to be on a low fat diet of formula for 6 weeks, “unfortunately the dietician wasn’t on board with skimming human milk for him and in the end it all hung on her decision.” Ruben struggled to digest the formula, had reflux and developed eczema… If every parent who has been mistreated by hospital staff writes a letter of complaint, things might begin to change.

Otherwise, if you and your baby have received great care, you might consider engaging in a more positive form of activism such as fundraising or other ways of expressing gratitude. Kakia relates: “A La Leche League leader called me frequently after we were out of the hospital. She helped  me re-establish my milk supply and listened to any concerns I had.” Kakia made a donation to La Leche League of Boston to show her appreciation. Petra, who is busy mothering three small boys, finds time to raise funds for the cardiac unit where her little one had surgery.

 

Holistic Parenting Magazine

 

Metaphysical Questions

It is natural, after you’ve been through a harrowing experience with your baby, to find yourself shaken to the core. Questions arise and answers are demanded: Why did this happen to my pure, innocent baby? Why my child? The lucky parents of healthy children might be asking, Why not my child? Why do bad things happen to good people?

You may find answers in your faith or belief system. You may find them unexpectedly from a total stranger. The answers may come in the still of the night, not in words, but intuition. And sometimes there are no answers at all, in this life at least.

The only thing you can take from this experience that will soothe your aching heart is love: The love you have for your baby and your partner. The love you have received from family, friends, hospital staff, volunteers, fellow patients, and strangers. This love radiates throughout the world and eases pain and suffering. Never ending and always abundant, we become more open and attuned to this love when we experience hardships.

About the Author
Kathryn Los
Author: Kathryn LosWebsite: https://holisticparentingmagazine.com
Kathryn Los is Owner, Editor, and Publisher of Holistic Parenting Magazine. Kathryn is married to her soulmate and together they parent six delightfully vibrant children in the Colorado Rockies. She has a background in sociology and philosophy, and has enjoyed working as a birth doula and breastfeeding counselor for over a decade. She has founded and led several women's groups, on a spectrum of communities and interests. Kathryn is an advocate for authentic, intuitive parenting. She considers herself a cheerleader of her six life learners. She is passionate about holistic parenting, and loves sharing inspiration with like minded people across the globe.

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