My daughter is 5 weeks and 3 days old and we have been in hospital 5 weeks and 1 day. I’ve held out on writing about this for so long because I was hoping that when it came to sharing this story, I would be back home, telling you all about it from the perspective of reflecting on a terrible ordeal which is thankfully over.
As it happens, we are still very much living this reality. My daughter is not going to get better. We have been told to expect to be here 6 months or even longer, though we are very much hoping to prove the doctors wrong.
Lots of things have stopped me writing about this until now. The idea of getting an article out of her suffering was distasteful to me. I had (and still have) a lot of anger towards nature, the one thing which I have always been so passionate about and so trusting of. Overnight my belief system, that of Karma, of the power of positive thinking, came crashing down and I was left utterly lost. The black and white outlook I had of the world, of nature and even of parenting was shattered. I had a lot of emotions to work through, and I wanted to do it very much in private.
The reason I’ve chosen now to write about it all is because I have seen the power of support. Friends and family have knocked us off our feet with their outpourings of love, their generosity, their kindness. I feel ready to let people in and share our story, though I don’t feel I have much to offer other parents right now in terms of parenting advice. This is such a big part of our lives now and I feel that after several years of building this community, I don’t want to continue to shut you out.
My sweet girl was born at home, unassisted in water in the early hours of the morning, 50 hours after my waters broke quite spectacularly. I had a very stop/starty labour which finally kicked into action with gusto, culminating with two and a half hours of intense active labour (with contractions every minute) including pushing.
She was born wide eyed and pink and we blissfully began what was to be a very short babymoon.
Two things quickly became apparent. She couldn’t latch to feed, and she could not poo. The midwife who we invited to our home after she was born complimented me on “such a fantastic latch,” but although our positioning was perfect, she did not and could not suck at all.
Over the next two days I grew increasingly tense over her lack of feeding and still not passing meconium. She became a little jaundice, and I hand expressed colostrum which I spoon fed her at regular intervals. I sought support and was reassured by midwives and lactation consultants that it was just a case of practice and positioning. Perhaps she was tired from the labour? Perhaps she had picked up an infection from the waters going too early? There was talk of a tongue tie.
Still she did not poo.
Two nights after she was born, with my milk still not in, I reached out to a friend and borrowed some donor milk. I fed her 5mls in a syringe and feeling happy that she at last had a decent feed in her belly, we went to bed. Her breathing started to sound laboured and she seemed uncomfortable so I turned her on to her side, where she promptly vomited green bile.
Alarm bells went off in my head. Myself and her Daddy decided to take it in turns sitting up with her, but something told me to phone the hospital just to let them know. Ten minutes later, we were rushing into hospital in an ambulance. The paramedics put stickers on her chest to monitor her heart, which they then ripped off her delicate skin. I was furious at them and her screams were unbearable. My reaction seems almost laughable to me now after the pain she has since had to endure, the blood tests, the surgeries. I would take the stickers 1000 times over if I could trade in the rest.
When we arrived at the hospital I was totally overwhelmed. It still hadn’t clicked that this was really serious. I still thought we would be home by morning. But then the doctors flocked in. She was grabbed and pulled, needles pushed into her brand new skin, she was attached to a drip and I heard the pediatrician whisper to another doctor, “This is a very unwell baby.” Her face was drawn and I could see her fear. I felt like I wanted to snatch my baby up and run out of there, but I couldn’t. This is a feeling I have experienced time and time again over the past month.
My baby was dying. Severe dehydration. Had she not had that big feed of donor milk, she may not have been stimulated to throw up, and we may have missed the chance to save her. I will be forever grateful to the dear friend who prevented this from happening.
The next few days were a nightmare. We were transferred to another hospital, where my poor baby girl was pulled and prodded, stabbed with needles and put through endless tests. Every scream caused me pain, it was as if we had been transported directly into hell. I could not understand why this was happening to MY child? How could it? These things don’t happen to good people do they?? I realised how stupid and ignorant I had been, how blind to the realities of the world. Of course bad things happen to good people. Of course they do.
When we felt as if things couldn’t get worse, they somehow did. We were moved from the children’s ward to the neonatal unit, a place where babies are kept in boxes and parents are unable to sleep beside them. Myself and Daddy endured three weeks of round the clock shifts to ensure that our baby girl had a full time loving parent to comfort and care for her. He has still been unable to return to work as he is needed to care for our son while I stay with our daughter, or vise versa. We survived on 3 or 4 hours of sleep a night, taking it in turns to care for her and of course our four year old who’s life had been turned upside down in an instant. The guilt I experienced over that was beyond unbearable too and something I am still not ready to talk about.
As the weeks went by, more and more conditions were ruled out. What we knew was that there was something seriously wrong with her bowel, but nothing seemed to be the answer. At nearly 3 weeks old, she went for exploratory surgery, where she was given a stoma and they found that her bowel was not contracting at all. Nearly 3 weeks on, the stoma still does not function and we are fairly certain she will never get over this.
There is very little chance she will ever get completely better.
She is on TPN, a form of intravenous nutrition, and though she is now breastfeeding more and more, she vomits a lot and it is still unclear whether she actually absorbs any of the nutrients from the milk. We have been told to expect her to be on TPN for years, but this is not a wonderful fix as it will eventually likely cause liver failure, resulting in her needing a bowel transplant which does not have a very positive success rate. It is all very scary for us.
The biggest hurdle for me personally has been taking this path away from the natural. It sounds awful to me now, but I always believed that I would have the strength to let a baby go who was unable to survive without medical assistance. That nature was never wrong and I would trust it. There have been times when I really felt that it would be the kinder option, I hate the fact that at a month old she has already cried more tears than my son ever did as a baby, that she has known so much pain and hurt in her short life. But logic and love are two very different things.
When it came to it, we turned our backs on what was natural and we fought tooth and nail to keep her. Perhaps nature will win in the end, and I have a feeling in our girl’s case it will, but we are fighting to give her whatever time we can. When she is not being poked and prodded, she is a happy and smiley baby, perfect in every way aside from being unable to poo. She is not in pain or distress for the most part. She is alert, she is strong and she is my daughter.
We counter the tests, the pain and the suffering with constant cuddles and unconditional love. Now that we are back on the children’s ward, she sleeps in my bed, cuddled safely in my arms. Despite it all she continues to smile. She continues to surprise us every day. We are privileged to know her and to be her parents, however long we get to keep her with us.
In this case, walking away from natural is what feels right.
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