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.
Aww hugs, it sounds like it’s been so hard. Hopefully you’ll continue to keep getting help. That’s great your diary free diet is helping. Well done for doing it as it’s so difficult to cut out dairy. You’re doing the best for her, you’re a great mum 😀 xxx
It hasn’t been much fun! But the good days are getting more frequent now 🙂 x x x
Gosh this had me in tears for you guys. It sounds so awful for her and for you. I know it’s nothing like as bad but Arthur had awful colic when he was tiny and would scream and scream and scream it was awful and I would panic and of course that didn’t help anyone. It sounds like you are doing a much better job then you’re giving yourself credit for in handling it all.
I’m pleased you’re booked in to see the paediatrician I hope you can finally get some real answers. Xx
Ah thanks lovely. It has been so hard at times, but I think we’re doing ok. She is a happy little thing really x x x
She really is a beautiful little girl, and I am so sorry that you are all going through this. I thank my lucky stars that we’ve never had to deal (touch wood) with anything like this. I really hope that it starts easing up for you soon x
Thanks lovely. I am thankful that I know from experience it doesn’t last too long x x
Oh lovely I am so sorry to hear you are still going through such a rough time! I totally relate to the fact that it is hard to get to now her and enjoy her when every day and night is so hard work. As you know we struggled with LM but moving on to a lactose free formula seems to have been the solution in her case. She is now starting to teethe which seems to causing tummy problems (always something!) but things are nowhere near as bad now and we can enjoy her more. I so hope you get the help that you and she needs as it really is rough! Hugs! xx
Thanks lovely. We are seeing changes now that the dairy is out of our systems. Its felt like a bit of a slog but we’re getting there x x x
Breaks my heart. Poor little lady!!
I know, poor baby. She has just had an awful reaction to soya today too. I wish I could take her pain away! x x
My son had IUGR was born 3lb at 36 weeks and we were in hospital for 7 weeks. He is 101/2 now and fabulous. That first you was scary. Give yourself lots of time and dont expect too much. apart from taking care of her and getting through….. this has been a big trauma for you too. It will pass in time and she will be really well and strong Thinking of you
Oh my goodness, he was a tiny litle thing! We were so lucky that Elsie was so big in the end. And thank you for your kind words, there are scary days indeed and I do worry constantly about her weight. I just want her to be ok! x x x
Aww sending you hugs! Sounds like a hard journey. Its really hard for us parents to see our kids suffer but be strong for her okay. She will get her strength from you. Again sending you hugs. #sharewithme
Thank you x x x
I really hope you find the right diagnosis or at least treatment that can help her. It must be so hard for you to see her that way, sending you hugs x
Ah thank you. It is horrid to see her suffer but I’m hoping we will see improvement now x x
Awww, I hope things get better for you and Elsie soon, reflux is an awful thing to deal with. Thankfully once we had sorted Boo’s meds they really seemed to help – we did have to try a couple of different meds before we got lucky though!
She is so adorable! I hope that things improve when you have seen the dietician.
Thank you! We’re hoping the dairy free diet is going to help lots too. The meds definitely help! x x
Those oh so long days! I can’t believe she’s already three months old. I’m glad the dairy free is helping somewhat – and much as she suffered for your feta based slip up at least it gave you the motivation to carry on with it. You’re such a strong lady x
Oh they are such long days! Thanks lovely, I hope we can start to see lots of improvements now x x x
Ahhh bless you hunny it’s just not getting easier for you. You have been through a lot lately and she has too. I hope you get answers soon. It’s so hard for us parents to feel helpless and not be able to fix it. Sending huge hugs. I love her photos still 🙂 Thank you ever so much for linking up to Share With Me. #sharewithme
Followed you over here from a comment you left on my blog, and wanted to tell you that Elsie is a beautiful girl and this is a beautifully inspiring story (in progress) to go with it. Hang in there!
Oh Susanne how frightening it must be when she’s struggling for breath. I truly hope you’re able to give us a positive update on Elsie’s situation in her 4 month post! xx
This all sounds so difficult for you, don’t feel guilty for not having bonded yet. The fact is you’re still putting all your efforts into giving her the best chance of health, is that not proof of your love?? I bet she knows that mummy loves her everytime you try to console her when she is in pain, everytime she can hear your voice she will know it is mummy who is always there. I hope her health is sorted soon, but remember to keep looking after yourself too xxx
Gosh, you’re dealing with so much. I’m glad the specialists seem to be finally taking you seriously, and she may well grow out of the eczema in time – my son’s eczema started around 2 months and he’s mostly free of it now at 2 and a half. Thanks for sharing your journey, I’m sure it will be really helpful for other parents too. #ShareFriday
She’s gorgeous! I hope the diagnosis is swift and some normality can resume as soon as possible 🙂 Keep strong, at least you know you’re doing your best x
#ShareFriday
I’m so sorry you are having such a tough time. At least the dairy-free diet helps somewhat, even if not fully. Hope you’ve got a good support network of family and friends locally
It sounds like such a challenging three months for all of you but you sound like you are going a great job. Little Elsie is lucky to have a mum who is doing absolutely everything in her power to make things better for her. I hope you get more help on the medical front, it must be so frustrating to have so few answers.
You’ve all been through a lot hun, hope you get the answers you deserve. Elsie is beautiful by the way, how is she 3 months already?! x
It must be so awful to watch a baby in so much pain, and so distressing to feel so helpless. I hope you get a solution or she grows out of it soon. It won’t be forever is the best I can offer really. She’s just gorgeous and your doing amazing Zx
Having a bit of a catch up here and I do hope the last couple of weeks have been easier. I can’t imagine how hard it must be to watch your baby in so much pain. Thinking of you and sending love x