Today Elsie Rose is three months and 4 days old.
We have lots of smiles. We have half chuckles. We have lots of head bobbing as she cranes her neck to take in her world. She loves to look in the mirror. She loves bath time. She saves her best smiles for her siblings. She is fast becoming the best company.
And the worst.
And the guilt pours from my being as I type the words, but life with Elsie Rose is not always easy. The curse of reflux has us tight in it’s grip. And poor Elsie is suffering. And we are suffering. And some days are so hard!
She has been choking on the acid, a good two hours after her feeds. It’s terrifying to watch her body tense and her arms flap and her the redness spread across her face as she struggles to catch her breath. In my panic, I lifted her from her chair and ran screaming to the kitchen blindly. And the movement forces her lungs to wake up and the relief inhales exhales and she is back again. Next time I will break.
She arches her back and draws up her knees as she screams in pain. Her entire being is often engulfed in pain, fire-hot anger coursing through her tiny limbs and the stiffness makes her hard to hold, hard to comfort. She struggles to breathe well through her nose and many nights are spent propping her, rocking her, pacing the floors with heavy feet and heavy heart.
Her eczema is spreading along her arms and legs.
This is happening again.
A week after her tongue tie division, Elsie was seen at the rapid assessment clinic at the hospital. A trip to the GP after her choking prompted some action at last. The doctor was very thorough, listened carefully to my fears and concerns and lots of tests were performed. Tubes passed down her nostrils to check that they were formed correctly. A chest x-ray to check all was ok with her airways. Eyes checked. Ears checked. Reflexes checked. Skin examined. Medication doses trebled. Weight measures (9lb9).
The doctor feels that since my dairy free diet has not made any positive changes in Elsie’s conditions, that everything she is suffering could be working alone- and not linked to a cow’s milk protein allergy as we suspected. The eczema is not linked to anything. The reflux is not linked to anything (certainly it is no better since the tongue tie division) and the congestion is just ‘one of those things’.
This is not good enough!
We are being referred to the dietitian and will see a doctor in paediatrics next month. We’re on that long road again.
In the meantime, I’m getting into the swing of the dairy free diet. And now we know that it is helping, Her breathing is improved and with her increased meds she is having longer periods of calm. A mistaken sandwich with feta cheese reminded us only too clearly how things could be should I return to my usual eating habits- but at least we now know that this is not all in our heads. The cow’s milk protein allergy is real.
And in the turmoil of realising that our precious IUGR baby is suffering so much, we’re losing time. We’re losing chances to get to know our girl because too many days are spent trying to console her, to take away her pain, to soothe her to sleep. It’s been hard to love being her mum. In recent days I’ve found myself looking at her and realising how much I love her. I’m not sure I’ve realised that so deeply before. The torturous pregnancy and painful birth/ recovery along with the reflux and the tongue tie and the feeding issues… all of this has put our relationship on hold. And now I must fight to strengthen what we have, Elsie and I.
At three months old, we are forming a bond. We are going to get there after all.