Millie was taken straight away to SCBU while me and my partner where in shock, I was absolutely terrified I did not know what was going on everyone swooped into the room and took her away for medical attention, I had a shower to clean myself up was shaking all over the place I just wanted to see ...
Looking at my precious little daughter all hooked up just shows how vunerable Millie was and close to death. Millie ended up on CPAP machine; A CPAP machine (the capitals stand for continuous positive airway pressure) is another piece of equipment that can help Millie breathe. A CPAP machine gently inflates Millie's lungs and helps to keep them open. Air goes in through a mask or via a tube in baby's nose called a nasal cannula.Millie also was jaundice Millie’s skin turned yellow because of a substance called bilirubin builds up faster than their bodies can break it down.so that put her under Phototherapy lights, it helps Millie's body to convert the bilirubin to a harmless substance until her body can do this by itself. The lights also convert the bilirubin to a form that is more easily excreted. Millie was placed under the lights and wears a mask to protect her eyes.
Millie had her Domperidone 300mcgs x4 per week also having Folic Acid 1mg x1 per week, Dalivit 0.6ml daily and Sytron 1ml daily also.
Abit of info what they are all for .
DaliVit Multivitamin Drops contain the 7 vitamins essential for healthy growth in babies and toddlers.
Sytron (Iron) Babies who are born before 34 weeks gestation or who weigh less than 1800g at birth are prone to iron deficiency .
dense to provide the required nutrition in small volumes.
Nutriprem 2 is nutritionally tailored to meet the needs of preterm and low birth weight babies to help support catch-up growth, once they’ve been discharged from hospital. It is specially designed to help bridge the gap between a hospital preterm formula and a standard infant milk, and can be used
up to 6 months corrected age. Cow & Gate Nutriprem 2 should be used under medical supervision .this one was given on discharge.
This part is about two weeks later.
Millie was given a routine ultrasound head scan all preterm babies get this. It works by Sound waves are sent out from a small hand held instrument(called a transducer or probe), and reflected back to it after striking organs within the body. A black and white picture is produced by the sound waves on a TV monitor.
If the drainage of CSF is prevented at any point, the fluid accumulates in the ventricles inside the brain, causing them to swell and resulting in compression of the surrounding tissue. In babies and infants, the head will enlarge. In older children and adults, the head size cannot increase as the bones which form the skull are completely joined together. What causes hydrocephalus? The condition is caused by the inability of CSF to drain away into the bloodstream. There are many reasons why this can happen. Hydrocephalus can be congenital or acquired.
Millie has acquired Hydrocephalus.
The usual treatment is to insert a shunting device. It is important to note that this does not ‘cure’ the hydrocephalus and damage to the brain tissue remains. Shunting controls the pressure by draining excess CSF, so preventing the condition becoming worse. Symptoms caused by raised pressure usually improve but other problems of brain damage will remain.
The device is completely enclosed so that all of it is inside the body. The fluid which is drained into the abdomen passes from there into the bloodstream. Other drainage sites such as the outer lining of the lungs (ventriculo-pleural shunt) can also be used.
In most cases, the shunts are intended to stay in place for life, although alterations or revisions might become necessary from time to time. The tube or catheter may become too short as the individual grows and an operation to lengthen it might be necessary. Occasionally, as with any implant, there can be mechanical failure. Also, it is important to be aware that problems can occur with blockage or infection of the shunt. What symptoms should be looked for?
These vary enormously between individuals. Previous personal experience of a shunt problem is often a reliable guide as to what to look for.
Possible signs of chronic shunt blockage may include: fatigue, general malaise, visual problems, behavioural changes, decline in academic performance, being just ‘not right’ from the carer’s point of view.If a shunt blockage is suspected, medical advice should be sought from your neuro-surgical unit within four hours of acute symptoms starting. In shunt infections, symptoms vary with the route of drainage.
In ventriculo-peritoneal shunts, the symptoms often resemble those of a blockage. This is because the shunt becomes infected and the lower catheter is very often then sealed off by tissue. There may be accompanying fever and abdominal pain or discomfort or redness over the shunt site.
In ventriculo-atrial shunt infections, fever is present in most cases though often intermittently. Anaemia is frequently present, and sometimes skin rashes, along with joint pains. In contrast to ventriculo-peritoneal shunts, such infections may not appear for months or years after the operation when they were contracted. Various tests can be carried out for shunt infections and medical advice should always be sought if an infection is suspected. How are shunt problems treated?
Shunt blockages which are causing illness usually require an operation to replace or adjust the affected part of the shunt. Shunt infections are usually treated by removal of the whole shunt and a course of antibiotics before insertion of a new system. Modern approaches to antibiotic therapy mean that such treatment can be expected to succeed, in most cases.
We dried our eyes and had some water, our mouths where so dry but our body’s where sweating from the stress of it all. We put a brave face on and went back to see Millie in her incubator.
Day by dad Millie’s head was getting bigger; this seemed to go on forever and ever each day seeing her head getting big. Finally after a few weeks we got the call that Embrace Transport Service was coming over to take Millie to Leeds hospital.
About them / Embrace provides a 24 hours a day, 7 days a week, critical care transport service for critically ill neonatal and paediatric patients in the Yorkshire and Humber region. We are located near junction 37 of the M1 from where they can respond quickly to referrals from clinicians throughout the region.
They kept testing the fluid in her head to see the pressure and if it was clear this carried on for about a week to two week drawing of fluid and it was not working, Millie’s head was still growing way to quickly, we was told by the nuro surgeons Millie would have her first surgery to put a access device in her head. this was also do draw fluid off they were hoping this one might settle her head down.
Bit about the access device --In selected patients a ventricular access device (otherwise known as an “Ommaya reservoir”) is placed in the right frontal region for ICP monitoring or treatment of infections These cannot be flushed or assessed in any way by palpation, but provide the facility for potentially lifesaving percutaneous aspiration of CSF in the event of acutely raised ICP. This can be done by any clinician in this situation and simply involves the passing of a butterfly needle through the skin perpendicular to the surface of the skin at the apex of the dome of the reservoir, until a “pop” is felt. Elective sampling of reservoirs or shunts should preferably be carried out by a neurosurgeon.
So Millie was taken to surgery a few days later on the 22/04/10 never felt so sick in my life. Millie was taken over to the surgery unit we met the anaesthetist and saw the nuro surgeons, they let us in the little room to sigh all the papers and to kiss Millie goodbye and good luck, I ended up in tears thinking I would never see my daughter again. Jonny and I went done to the costa lounge, we were not Hungary it was mainly to keep us occupied and also with a few crappy magazines.
Well about 2 and half hours went by doing bits and bobs making phone calls to our family keeping them updated. Went back up to the ward about 10mins later was told all is ok and Millie would be back on the ward soon.
The Big day came round I could not believe we were going to go through more surgery but we knew it was for Millie’s good and to save her life just she was so small a been through enough already .
The porters came for Millie just like last time to take her to the theatre room, it was like repeating the other time again but this time we knew this was more serious and was not sure if she would make it this time round. With all the papers been signed again a few days before and consultants told us what was going to happen and been done regarding Millie’s VP shunt. We when to the surgical ward ware we said out good buys to her and this time we did not know if we would see our baby daughter again. Jonny and I both kissed Millie and told her we loved her, Tears shed again by us both when parting from Millie’s side.
We waited in the parent lounge for about 15 mines and I saw the doors come open and Millie in her incubator she looked so fragile and pale but that the time was just glade she had made it .
A few weeks later Millie was sent back to Pontefract SCBU with the help of the Embrace Transport Service team so they could look after Millie again there.
Millie has a Community Nurse , outreach nurse , physiotherapist , paediatrician, orthopaedist, health visitor, occupational therapist , consultant surgeon, speech and language therapist, dilatation , specialist shoe person, hydrocephalus nurse and many many more in her care team.
We also found out later on Millie is tough tied.
1) Blocked and /or infected shunt- increasing head size, tense fontanelle. Fever with no other obvious cause. Drowsiness/irritabity/
We have a open access to Leeds neonatal surgery ward 48 which I have to say we have used a lot of times with Millie. All thank god where false alarms.
My Millie now at 3 years old