A prayer for sweet little Chloe

by Kira
(USA)

Chloe was born at 34+3 weeks due to pprom,
She was a tiny 1.47kg (3lb 4oz)
For the first 6 weeks I expressed breast milk for her, then unfortunately my supply went so she was switched over to nutriprem formula, that is when our problems began - she suffered upto 20 brachicardy attacks daily each time requiring oxygen to bring saturation levels normal,
They suspected reflux - and put chloe on infanct gaviscon, this didn't work, they then tried carobel to thicken feeds, didn't work again.
She had 5 weeks of suffering these attacks, they tried every formula except for neocate.
I asked several times for second opinions as thought there was more than just reflux, in the end we got our second opinion for our top gastro Dr's in the children's hospital, they had chloe transferred, did a Ph impedance study, this shown significant reflux with a demister score of 35.7 (our normal ranges are under 14 apparently)
Lansoprozole was initially tried, this was very quickly maxed out and not effective anymore, she was also transferred onto neocate milk which stopped the brachicardies but not the reflux acid, she screamed for 24hours a day, was never happy and vomited anything upto 10minutes after a bottle right up to 3 hours later, it was a vicious cycle of feed, vomit, feed vomit.
She was then eventually switched to omeprazole which worked, she still vomited but no longer arched back, and turned into a happy smiley baby.
2 months after that, she started becoming uncomfortable, vomiting and the cycle started again, she then started to refuse bottles, would scream as soon as she saw it,
Numerous admissions and we ended up with a nasogastric tube for bottle aversion, this worked for 1 week then the vomiting started again, they added ranitidine into the mix, and also instead of bolus feeds trialled continous feeds at a slow rate per hour,
The continuous feeds being slow stopped the vomiting, and I got my happy smiley baby back,
Until just over a month and half ago she was extremely settled other than during weaning I discovered several times that given anything high protein such as any meats she couldn't tolerate these, her body seemed to shut down, she stopped going to the toilet, she would vomit within 6 hours of anything high in protein and continue for the next 24 hours, during this Reaction she cannot even tolerate the neocate milk, she has to be put on clear fluids only.
Our gastro Dr just told me to keep trying her. With food she always vomited more.

About 5 weeks ago now, she had a particularly bad day where she was struggling with vomit, and the acid smell was horrible, during a vomit episode she went purple in the face, and really struggled to get her breath. I took her to the hospital and I queried if she had aspirated, no no they said she's fine.
She continued to deteriorate and I took her to our local GP, who confirmed she had a chest infection and prescribed antibiotics, 2 days after that she was rushed to hospital struggling to breathe, there a chest x ray confirmed pneumonia, and as I found out a few days later they believe it to be aspiration pneumonia due to the events leading up to the hospitalization.

Chloe was in just over a week, during the chest x ray, several doctors picked up she had fractured ribs, 2 right and 1 left in several places, Chloe's blood showns her alkaline phosphate levels to be in excess of 1500. However her calcium and vitamin D levels were normal.

A referral was made to a metabolic bone specialist for us, and our local pediatrician started Chloe on phosphate supplements. Unfortunately this was prescribed wrong, and Chloe was overdosed on phosphate, causing her to become hypocalcemic with levels of 1.2 for calcium.
She was admitted again and given iv calcium and phosphate was stopped at that time till we saw metabolics, during this admittance the local peaditrician decided to do a full skeletal survey (xrays) this produced the most awful images no parent wants to see, Chloe has several fractures to both legs tibia and fibia, and also her right arm radius and ulna, at no time did chloe ever stop using her legs or arms and didn't show any indication of being in pain with these, as you can imagine my world turned upside down to think of these horrific fractures upon my 10 month old little girl, and then to think that potentially a cuddle could have caused any of those fractures.
The very next day we seen the metabolic consultant, he explained that Chloe has something likened to hypophosphatasia rickets, and unexplained osteopenia, her bones are jagged on the edges, and her alkaline phosphate levels were still high.
He explained that Chloe is in an extremely fragile state, her bone density is low, and he was amazed at how she was smiling, laughing and showing no signs of pain.
Chloe was started on joulies sodium phosphate and was weaned onto this due to the previous hypocalcemic tetany.
She is so far tolerating this and bloods show it
Being absorbed as the levels are coming down, unexpectedly the calcium levels started dropping so she is also on calcium supplements now as well which are helping to maintain the levels.
Until the root cause is found which they highly suspect the high dosages of ppi's as all other tests renal function, absorption are all normal, they can only maintain the levels, it's down to the gastro team to try and sort the reflux out, the next step is a jejunal feeding tube to replace the gastronomy tube she already has in and also a fundoplication which I have always wanted to avoid due to the risks associated with that.

Daily chloe is a happy smiley bubbly baby, however she is 1 on the 17th June, and only weighs 12lb 9oz due to the GORD and feeding issues, she has slightly enlarged ventricles in her brain which are within normal range and noone is concerned, she has a slight heart murmer, cannot tolerate protein of any kind and right now life is tough,
Chloe doesn't sleep through the night, she has 15 lots of medication doses a day, first is 6am and last at 11pm, she then wakes at 1am, 2am, 3am, 4am, and 5am.
As you can imagine myself and my partner are exhausted, we have no outside help, Chloe is too vulnerable to be able to go to a daycare centre, and we never know what is going to happen, I waited 9 years for chloe after unexplained infertility I naturally fell pregnant but was so sick during pregnancy, I picked up infections easily, and was on antibiotics quite a lot throughout, my waters broke at 27 weeks, and through best rest we got to 34+3 where she arrived via emergency c section.