The story so far of my new baby.

So little Rowanna was born after I was induced 2 weeks early on the 10th December 2010 weighing 9lb and 13oz.  She was induced early due to my diabetes and her growing too big.  When I was induced I was already 2cm dilated.  I was induced on the 9th at 11am after having contractions every ten minutes since the night before.  My partner and I stayed in a near by hotel the previous night so we could arrive at the hospital for 8am the next day.  My partner was booked to remain at the hotel for another 2 nights.

After having my induction all my contractions stopped, so I spent the day walking the corridors and bouncing as hard as I could on a Yoga ball.  At about 11pm I went to bed and fell asleep, waking at about 3am in a flood of water!  I had Polyhydramnios throughout the pregnancy so there was a LOT of water!  The water was a green colour so I informed the midwife on duty as I knew this meant that the baby was distressed and had pooped in the womb and that this could cause infection.

I finally gave birth after a distressing and very painful labour without breaks in my contractions at 5:16am with my partner present.  In the room were also about 6 midwives and 2 doctors.  Rowanna’s heart beat had gone down to only 50 and I had hemoraghed so she had to be sucked out with the ventouse.  After she was born she was taken off to be resuscitated as she was not breathing.  During this time I started to become aware of the fact that she was not crying and began to panic, begging the staff to tell me why she wasn’t crying and begging my partner to go and look at her to see if she was okay.

Finally I was able to have a hold of her for a few seconds before she was rushed away to the special care baby unit due to her saturation levels being low.  To begin with she was in an incubator and on oxygen as well as IV fluids because of low blood sugar levels.  She was also put immediately on antibiotics because of the risk of infection due to the meconium in the waters.  I’m not sure of how long it had been before they said that I could bring some clothes down for her as she was showing improvement and had come off of the oxygen and could soon have her IV removed…I think it had been one day but as I had not slept it all blended in to each other.

When I returned with her clothes I was told I couldn’t go in the room as she had developed complications and was being looked at by the doctors.  I could see through the glass that she was surrounded by staff all working on her and with wires attached.  I managed eventually to contact my partner after some difficulty to let him know he needed to get to the hospital straight away as she was in critical condition.  She was moved to another room from special care to intensive care.

The doctors were in conference call with children’s pediatric cardiology team in another hospital being instructed on how to treat her.  They had already attempted to shock her racing heart beat (276) back to normal by applying ice packs to her forehead and dipping her in ice baths as well as pumping various heart medications in to her via the cannulae in her foot unsuccessfully.

They informed me that the medication was not reaching her heart fast enough via her foot and so spent the next 24 hours trying to get another line in to various veins throughout her body.  At one point they inserted a line in through her forehead but due to how fast they had to push the medications through they blew her vein causing a large lump to appear on her head.  Eventually they were able to get a line in through her umbilical cord and one of the slow acting beta blockers, propranalol that they had given her earlier in the day kicked in and began to stabilise her.

During her stay at the hospital where she was born she has had Echocardiogram scans on her heart to discover if there was a cause for her heart condition to develop, although a hole in the heart has been detected (quite common in premature babies and being something my 3 year old was also born with) this is not something that is known to cause the type of condition she has.  They also did Electrocardiogram tests where they just monitor the heart frequency waves which is different to the scan which shows the heart on a monitor in blue and red colours so you can see the blood flow through the heart.  The Echocardiogram scan can show physiological problems with the heart whilst the Electrocardiogram shows the frequency waves of the heart as some underlying conditions such as Wolf Parkinson White syndrome show up as different frequency levels.

Once she was stable she developed jaundiced but it was not bad enough for her to need any treatment.  Her infection levels were also getting higher despite being on antibiotics so doctors decided to perform a lumbar puncture to rule out meningitis.  Fortunately the test results were clear and shortly after her infection levels began to drop.  After a few days of being stable she was transferred back to special care.

At one point she developed a really bad rash on her chest which doctors suspected was from putting her in some newly bought clothes that had not been washed prior to her wearing them and informed me that they believed she had very sensitive skin and we’d have to be careful what products we used.  She then ran out of Huggies pure organic nappies and so was put in some non organic nappies and developed a nappy rash so bad that her bottom was severely bleeding.  The hospital tried various creams such as metanium and a spray designed for bed sores – Sprilon without success.  I requested we try Bepanthen and return to using the organic nappies.  As soon as we did this her rash cleared up very quickly.

The doctors told me that she was still very sleepy and not waking up to demand feed, she is meant to be having 150mls of milk per 1kg of her body weight in a 24 hour period but was not even drinking half of this via her bottle feeds of SMA and expressed breast milk.  The feeds she is having she takes whilst sleeping too.  Although it is common  for babies from diabetic mothers to be sleepy at first and struggle with feeding, it normally still only takes a few days to a week before they are normalised and demand feeding.  Rowanna is now 23 days old and still drowsy/sleepy and not waking herself to demand feed, nor is she drinking even half of her bottle when offered to her and is having to be tube fed through her nose.

The doctors have said this is more of a concern than her heart condition.  They have told me that she might have a problem with her brain and though an initial basic brain scan on her soft spot have looked okay they need to do further tests on her brain especially to test the hormones that are being released from her brain as well as those in her abdomen.  On top of all of this they have sent off for chromosome testing.  She has been transferred to a hospital nearer to home though so that myself and my partner can visit her more often as before we could only get in to see her once a day due to her being in a hospital 20 miles from where we lived and having 3 other children to take care of.

Rowanna is still currently in the special care baby unit of my local hospital and we have no information on when she might be able to come home other than having been told that when she is normalised (feeding properly) she should be able to come home providing no further complications arise.  She is in an incubator right now but only because she has recently been transferred from another hospital and it is common procedure for her not to be mixed with other babies until swab results have come back saying that she does not have MRSA.  Once the test results are in and clear she will be put in a normal hospital crib and in a room with other babies.

Edit to add:  The racing heart beat she had is called Tachycardia which is one form of Arrhythmia which in Rowanna’s case is caused by a condition called SVT which is where the hearts own natural pacemaker (made up of lots of cells) does not send the signal to the other part of the heart to tell it what to do, much like a short circuit in an electrical circuit board.  Normally the heart has 2 back up pacemakers known as secondary pacemakers so that if the primary pacemaker fails the heart can still regulate itself, in Rowanna’s case both primary and secondary pacemakers failed.  So far we don’t know what caused her Supra Ventricular Tachycardia to develop and so further tests are being done.

This week she will be having further Echocardiogram scans at our local hospital.

As of today 05/01/2011, due to her struggle with feeding we are now experimenting with waking her every four hours to bottle feed without any top up via her feeding tube (which has been removed for now) and they will accept her only drinking 100 ml/1kg of body weight.  Also attempting to feed her with a NUK bootle and teet that is as close to a nipple as possible and reduces colic.  I have been informed that one of her problems is she gets a lot of wind and refuses to feed when she has wind, so needs to be winded every 5-6 sucks on her bottle.  She is also very hard to wind as she arches her back and pushes her tummy out when you’re trying to wind her.  So if we spend one hour trying to feed her, at least half of that is being sat trying to wind her!  I have also requested to try Aptamil instead of the SMA and will be asking her Neonatoligist to request donated breast milk from a breast milk bank.

For more information about breast milk banks or to become a donor please see UKAMB

Not only have they emailed a response to my queries and advised me on how I might be able to get some donated milk but they have given me lots of tips on how I can try to stimulate and increase my own breast milk production.

For more information on Chromosome Disorders or to get support please see UNIQUE

For more information on SVT in Newborns please see this fact sheet – please note my daughter is not under this hospital but this was all I could find on line that best described what is happening with us based in the UK.

Please feel free to ask any questions about anything you’d like to know more about.  I will try to keep this page regularly updated with our progress.

To read more about my difficult pregnancy please read here

If you enjoyed reading this post please share it with your friends.

 

 

Edit to update on 06/01/11:  Rowanna has taken more of her feeds today, she has had every feed on time and has had between 80-100mls of each feed except one that was 60mls!  This is fantastic news and hopefully the start of her becoming normalised so she will be able to come home.  Fingers crossed!

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3 Comments (+add yours?)

  1. wanda ( hopee )
    Jan 05, 2011 @ 20:26:32

    It was so nice to be able to read an up-date on little Ronnie , it gave me more understanding of her condition , praying for her , you , and the rest of the family , love ya

    Reply

  2. sweetdeanie
    Jan 05, 2011 @ 03:54:08

    Thank you Alice, I’m sure she will no matter what results we get, I already adore her so much and nothing can change that. I know her sisters feel the same way about her too as does her daddy. We can’t wait till she gets to come home with us. Sending love and hugs to you and family xxx

    Reply

  3. Alice Turrell
    Jan 03, 2011 @ 10:58:30

    I pray that Rowanna will grow to be a beautiful fun loving little girl just like her 3 sisters x

    Reply

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