Monday, December 6, 2010

Baby group and our first "contraption"

So today was the last Baby Group of the year at the Children's Development Team.  It will start back up again late January.   I love going every Monday, so I will miss it!  We are going away anyway though, so even if it was on we'd be missing a month.
I took some photos today of Joshua doing some of the things at Baby Group.  They have also loaned us a corner chair.  They talked about it since he first started going, and now they decided to send it home with us.  They told me that this is not supposed to be to help him sit, but rather to support his body so that he is able to do things with his hands and arms.  I asked them what the difference is between sitting him in the bumbo with the tray on, or the high chair with the tray on, and they told me that the corner chair positions his shoulders nicely in a way that is best for doing things with his hands.  The way they explained it to me is that they need to develop their skills using their hands while in a seated position, and if we waited for him to be sitting properly before trying to do this work with his hands, then it may end up that his hands are behind where they should be.  So even if he ends up behind with his sitting etc, hopefully he can still be on track with his hands.  Well, that is what they said and I agreed to take it and use it, it can't do any harm anyway.  He is just meant to use it for short periods (or as long as he will tolerate it) a couple of times a day.

Sitting in the big dish - He likes to spin FAST!

Trying out the corner chair

On the Scooter Board. 

Having fun on the platform swing

In the corner chair at home and not overly thrilled!

Playing with some toys in the corner chair at home

Wednesday, December 1, 2010

Everything counts

Today I started reading another blog by another HIE Mum telling the story of her son Elijah.  Looking at his baby pictures and reading about him, he reminds me a lot of Joshua.  With prominent ridging on his head, microcephaly and high muscle tone.  Not surprisingly, I can also relate to a lot of the things his Mum has said.  I wanted to share this particular entry of hers now:

http://elijahland.com/2008/12/i-didnt-know.html

I am sharing this one because I do get excited by each little thing, like him pulling his feet up in his hands, like him passing an object from one hand to another.. little things that are no big deal to most people, but a huge freaking deal to me because I am fully aware that he may never have been able to do it, and that each thing he CAN do is a small miracle in itself.  I've excitedly shared things with people in the past and had them respond with something like "Yeah, all babies do that".  WRONG.  Not ALL babies do that.   I take nothing for granted, and each time I see my son advancing his skills and learning something new, I am overcome with joy, with excitement and with raw emotion.  When he started smiling at me, I would literally tear up with emotion.  The first time he laughed I nearly bawled my eyes out.  Doing something like looking for a toy he has dropped and picking it up himself may seem like no big deal to most, but these things fill me with immense pride in my little boy, who is amazing in everything he does.  

Tuesday, November 30, 2010

6 Month Stats

Percentiles from www.infantchart.com

Weight    7.24kg/16lbs (17.2%)
Length     70cm/27.5in     (79.6 %)
Weight for Length  (2.0%)
Head Circumference  38.9cm   (0.1%)

My tall skinny boy with a small head!  But I think if he had a normal sized head then he'd probably weigh more...

Sunday, November 28, 2010

What do you say?

When people who don't know the whole story have random conversations with you?  Mostly, I say Nothing.  We were at Rod's work Christmas party the other night and we took Joshua with us.  He was the centre of attention.  Which is how he likes it!  All these women were telling me, "He is SO beautiful, SO SO beautiful" and "I have a 4 year old and I am just trying to think back and remember when he was this beautiful" and "Oh he is just so cute, so handsome, he is a beautiful, beautiful baby!"  Ok, I agree with all of these things, but I am his Mother.  Do these people not notice that he has a head the size of a 7 week old when he is 6 months old?  People often comment that he looks big, and people were telling me he looked older than 6 months.  Now, he is only on about the 30th percentile.  This means that 70% of 6 month olds are bigger than him.  So then I wonder if his small head makes his body look big and that is why people think he is big.  More than likely, it has nothing to do with it and people just make random comments to anybody about their baby, and they have no idea what they are saying.
And then there are the comments "So he is your first hey, has he been an easy baby for you?".  My fellow May Mama Shannon once described her daughter Luisa as her "Starter baby".  A nice easy baby to ease you into first time parenthood.  Well, I am not sure that you can describe the HIE experience as being an easy one.  So when a person asks me something like that, should I tell them the truth?  And watch their mouth fall open to the floor when I turn around and tell them that this "Beautiful baby" they are gushing over was actually born with severe brain damage and had to spend time in intensive care, is not expected to be normal, that his brain is not growing as it should be and that we have to spend our lives constantly worrying about the next milestone, and going back and forth to doctor's appointments and therapists.  Probably not.  They are just being nice and trying to make conversation, so I just smile and say "Oh yeah".  This kind of thing happens a lot.  The women that work at the post office, the nurse that takes my blood, people working in shops we go in...  all just trying to be nice and make conversation by asking about your baby.  I don't know them and it is not really any of their business, but I feel like I am a big faker, to just smile and say everything is fine, when really, it is a bit more complicated than that...    

At the Christmas party eating a Christmas Cracker

Wednesday, November 24, 2010

Children's Development Team

After the hospital Physio's made their referral to the Children's Development Team (CDT) I got a phone call from them.  They asked me to bring him in for them to do their own assessment to see whether or not their service was appropriate for him.  Basically, you need to have a problem of some kind to be accepted, but if you are too severe (delayed in more than three areas) then they refer to you the Carpentaria Disability Services Early Intervention Team.  So I brought him in and we were seen by one of the CDT physiotherapists.  She did a developmental screening using the Ages and Stages Questionnaire (ASQ).  He was 5 and a half months old, and she used the 6 month old screening.  The results were that he has no developmental delays at this time.  He was borderline for his gross motor though, due to his high muscle tone.  Basically there is a potential there for delay if he is not able to overcome the problems being caused by his muscle tone.  The biggest problem is that he is not taking weight on his arms.  On extended arms I should say.  He props himself on his elbows and gets up on his hands a bit, but his arms are still very bent.  He is getting up onto his knees and trying to move around, but he is not using his arms as a baby usually does when crawling.  This results in him moving on his legs and his head.  The usual strategy for trying to help with this is to prop the baby up with their chest on something like a rolled up towel, to encourage them to place their hands down onto the floor and bare some weight.  Joshua just kicks himself right over the top!  So she said they would have to be creative in thinking about some ways to encourage him to take his weight on his arms.  This was also impacting on his ability to sit, because most babies will begin to sit by using their arms to help with balance, in a tripod position.  He wouldn't/couldn't do that.
So he was accepted into the CDT, for physiotherapy and I was also invited to bring him along to Baby Group.  Baby group is basically group therapy for babies.  It is set up like a playgroup with lots of activities and it is run by Occupational Therapists.  There are about six babies that go each Monday with their mothers/carers and the Therapists go around and help work with each individual baby and help to give strategies to use at home to help with the issues being faced by each one.  There is also story and singing time and parachute play.  It is quite enjoyable, and we've only been for three weeks so far but I feel like it had been beneficial for him.  On our second week there, the OT was working with him on sitting.  When you tried to place him in a sitting position he would pretty much fall right away and wouldn't use his hands to try and support himself.  They were considering a corner chair for him (personally, I think this is a bit over the top at his age, because many babies are not yet sitting, he wasn't even 6 months old) but she decided that he was trying to do it himself and that the best thing would be to let him try.  After working with him on the Monday, the next day, he could sit.  Not perfectly, he slumps forward, but he was doing it MUCH better than he was previously.

Sitting up and reaching for toys
He can keep himself up on his own now, and they were really impressed with how much better he is sitting this week than he was last week.  It is still a work in progress, but a great improvement.

Other things I have noticed is that if he is laying on his back and drops a toy, if it falls to his left he will reach out with his left hand and try to pick it up.  If it falls to his right, he will roll to his side so that he can use his left hand to try and pick it up.  If you make him use his right hand, he can do it, but he is strongly favouring his left hand.  He will also pull his left foot up with his left hand but not his right.  If I give him the foot he will hold it but he is not doing it on his own.  Tahnee the physio had a look and she thinks the tone is mainly a problem in his arm rather than the leg (though I think the right leg is a little tighter than the left, it is no where near as bad as the arms)

So things are fairly good with Josh, but we do have some challenges that we need to work on with Physical and Occupational Therapy.

Wonder

One evening I drove up to the Grocery store to get a few things.  Rod always leaves the car radio on "interesting" stations (I usually just have a CD on).  When I got into the car on this particular day, they were doing an interview with a singer Natalie Merchant and I was listening to it as I was driving.  They were talking to her about one of her songs, and how so many parents of children with special needs love her song and share their stories with her etc.  They also interviewed a doctor who said he has seen the lyrics of this song posted above many hospital beds and that it seems to be an anthem for special needs children.  I wondered what the song was, but after the interviews, they started to play the song.  I instantly loved it and sat in the car listening to it, crying my eyes out.  I had to suck it up though, because I was sitting in the carpark of Coles and still needed to go in there.  LOL  When I got home, I had no idea who the singer was or what the song was called, so I googled some of the lyrics and found it that way.
It was perfect.  That is my little darling, "A wonder of God's own creation".  The only problem with this song was that it was written about a female.  (I think it was originally written about someone with Down's Syndrome, at least she has a girl with DS in the film clip).
So, I have an uncle (Alan) who loves to sing and play his guitar, so I asked him if he would do the song for me but make it suited to a male.  Because, no matter where this path takes us, with love, with patience and with faith, Joshua will make his way.

Here is the song:

Tuesday, November 23, 2010

3rd Hospital Appointment - DRAMA!

This time, we were scheduled to see the Physiotherapists and then go up to the Paeds clinic.
So we took him to the physios and saw Kelly.  She said that he still had issues with his muscle tone but that he was progressing at the expected rate and that although it is still early to say, she felt that their role with him would be more of a monitoring one.  She said she wouldn't want to see him again for another three months, but that she was leaving, moving down south and Tahnee, the other physio we'd met the first time was also leaving the hospital to go and work for the Children's Development Team.  She said she would refer Joshua to the Children's Development Team so that we could continue to see Tahnee, rather than have to meet somebody new through the Hospital.  She said if I didn't hear from the Children's Development Team in January to give them a call and gave me their details.  This is all sounded good.
Then we took him up to see the Doctor.  This was the same doctor that gave us his MRI results after he was born.  I do actually like her, she seems nice, but she has a habit of giving us bad news.
Like the nurse I saw for his 4 month needles, she couldn't feel his fontanelle.  She sent us for an x-ray right away.  Rod and I had to hold him down while he screamed his head off.  When I picked him up, he vomited all over the floor from being so upset.  We went right back up to see the Doctor.  She showed us the x-ray images of his fontanelle.  It was almost closed.  She also showed us some ultrasound images they'd done of his brain after he was born, where they had done the ultrasound through his fontanelle.  (I didn't even know he'd had an ultrasound! But I suspect there is a lot of things I don't know...)  She told us that he needed surgery to open his skull back up and that this was not the kind of thing they would wait around to do and that we would have to fly interstate to another hospital that week to have it done.  She said that given his high muscle tone, his brain obviously isn't 100% but that he was pretty good and that she felt his brain is working pretty well and she didn't think his head should be that small.  That they'd expect him to be worse than he is for having a head that small.  I asked her "Is his head small because his brain is not growing, or is his brain not growing because the skull is too small?" She said she wasn't sure and that it could be both problems, but that we needed to do the surgery to give him the best chance for brain growth.
So once again, we'd taken him to the doctor thinking he was pretty good and then had a bit of a bombshell dropped on us.  I kept it together surprisingly, considering I am a bit of a serial crier, but later that night I was laying in bed with my beautiful baby beside me and I had a bit of a cry.  I felt so bad for him, he is just a little baby and he doesn't even know what is going on.  How could I give my baby to someone to go and cut him open?  It freaked me out to think that they would be working so close to his brain... his already fragile brain....  I imagined it to be like OOPS one slip of the hand and UHOH, brain damage.  (Well...  MORE brain damage).  But at the same time, if there was any chance of it helping him, then it had to be done.   It was a Friday that we saw the doctor, and she said she'd be in touch with us on the Monday to let us know what was going to happen as she needed time to organise it all.

She called me on the Monday morning and told me she had spoken to the neurosurgeon in Brisbane (which was our preferred location for the surgery to the fact that my mum is there) and they had asked for a CT scan to be done to confirm whether or not the cranial sutures were in fact fused, as it is possible for the fontanelle to be closed but the sutures still open.  That sounded sensible, so we were scheduled for the CT scan that Thursday.  They wanted me to get him to sleep for the scan so that we could avoid sedating him.  This was a little difficult.  His appointment was midday, he usually goes to sleep at 1pm.  If I was to keep him up in the morning to get him tired, he'd just fall asleep in the car on the way to the hospital.  So I let him sleep as normal in the morning.  And he STILL fell asleep in the car on the way to the hospital.  Once we were there, I was trying to rock him to sleep in my arms.  I realised now that this was the disadvantage of having a baby that puts himself to sleep....  being rocked in my arms was a source of amusement.  I tried putting him on a bed and patting him.   I paced around the room.  It was 1pm by the time I got him to sleep, his normal nap time funnily enough!  And then, the had someone that had come in through the emergency department that required a CT scan so we had to wait.  I was thinking that'd be right, I just get him to sleep and then they take so long that he will wake up again before the scan is done!  But fortunately, it didn't take long and we got him in there and got the scan done and he stayed asleep.  The guy that did the scan told me that the doctor would have the results within 24 hours.

I hoped that I would hear from the doctor the next day, but I didn't.  So then I hoped I would hear from them on Monday.  But I didn't.  By the time Monday afternoon rolled around I decided I would call them.  The Doctor told me to call the paediatric clinic if I needed to get in touch, that they would be the best ones to help me.  So I called the paeds clinic.  It was engaged.   I tried again.  It was ringing, but then it went to the tone like I'd been hung up on or that my call was rejected.  So I tried again a bit later and I got the answering machine.  So I left a message saying that I was following up the results of Joshua's CT scan.  I hoped that I'd hear from them the next day.   I didn't.  So on Wednesday afternoon, I was annoyed and called back.  This time a nurse answered.  She seemed surprised.  She told me that she got my message and she had sent an email to the doctor with my phone number and saying that I was chasing the results.  "And you never heard back?!"  No, thats why I am ringing....  She put me on hold for a minute and came back and told me that she was going to page the doctor and chase it up.  I said I really just wanted to know what was going on because when we saw the doctor it was like some big emergency that he needed surgery like RIGHT NOW and now its been almost a week since his CT scan and I am still waiting to find out.  She said she understood and she would follow it up.  So then I hoped to hear something the next day.  I didn't.  FINALLY on the Friday (2 weeks after seeing the doctor originally) she phoned me.  She apologised and said she had been away and didn't want somebody else to call me if it wasn't urgent.  (Well, thats alright for you because you KNEW the results....  I didn't know anything!)  So, the CT scan showed that the cranial sutures are close together but they are not fused so he didn't need surgery.  His head is small and there is nothing that can be done about it.  So basically, having the CT scan done ruled out any issues with the skull fusing prematurely and we know that his small head size is purely related to the fact that his brain is not growing normally.  She said the CT scan also looked at his brain and it showed "significant differences to a normal brain" but nothing they didn't already know from his initial MRI.  So, that's that.  He just has a silly head.  A sweet, silly, small head.  

4 month Needles

Now, I think I made it quite clear in a previous post that me and the child health nurses are not really friends.  I took him to the clinic for his 4 month needles, and I wanted to have him weighed and measured while I was there.  So after seeing the "needle nurse" I went in to see the other nurse.  Honestly, I thought I'd just be able to put him on the scales, have him measured and off we go.  But no.  She made me have a seat.  She pulled up his details on the computer.  She started reading.  "Wow, he had a rough start didn't he?"  I replied "He sure did", while on the inside I was letting out a sigh and rolling my eyes.  She informed me she was going to do all of the checks they usually do at 4 months.

Now, my opinion on all of this is that too many cooks spoil the broth.  We have regular appointments at the hospital, and to be frank, if the nurse had any concerns what would she do?  Refer him to see the doctors at the hospital!  So, I figure we might as well skip the middle man here, and just leave it to the doctors to see what they think.  Anyway, being the nice polite person that I am, I allowed her to proceed.

Now, at our last appointment at the hospital, the doctor had advised me to start Joshua on solid foods at 4 months old and to trial him off the reflux medication.  I actually ended up stopping the Losec before then and he did wonderfully, and I started introducing solids when he was 16 weeks old.  But, of course, the current recommendation for solids is 6 months.  So when the nurse asked me if he was having anything other than breast milk, I lied and said No.  I just couldn't be bothered having that conversation with her, even though I was going on the recommendations of the doctor and also following Joshua's own signs of readiness.  (If the kid ain't ready, I can't force him to eat!)  She seemed happy when I said No, and told me to wait as long as I could but that some babies are ready before 6 months so "maybe 5 and a half months, just see how you go".  

Then she gave me an information sheet about introducing solids, and a fact sheet about "ages and stages" for 4 to 8 months.  I have a degree in child development and can find just about anything I want on the internet, but thanks for that.  (Hurry up and let me weigh him and go already!)  Finally she weighed him and measured him, and also measured his head circumference.  Of course, by now I am a professional head circumference measurer, but I wanted to see if she got the same as what I get.  She did.  And as I already knew...  his head circumference was now off the bottom of the percentile charts for his age.  His head was the size of an average 6 week old baby at 4 months.  Before she measured his head though, I made sure to tell her that I already knew his head wasn't growing (so save your speech lady!).  Well that is not true...  his head is growing.  It is just growing veeeeerrry slowly.  And then she did her "developmental check" which revealed he is totally fine and on track for his age.  (this involved asking me if he had rolled over yet, and seeing if he could hold her pen, noting that he held his body well and that he was vocal)  So, hardly comprehensive, but it still pleased me even though I knew he does have some issues.
She couldn't feel his fontanelle...  This didn't really concern me because other people had trouble in the past feeling his fontanelle and it had still been open so I thought nothing of it.

Monday, November 22, 2010

Mother's Guilt

We all get it.  But some of us have it worse than others.  It is not easy to know that your baby was injured while they were still in your body, a place they are supposed to be safe and protected.  I feel like my body failed me, and failed Joshua.  Is there something wrong with me, and I can't grow good babies?  First I had a miscarriage, and then I got pregnant with Joshua.  He was supposed to be my good healthy baby after my first pregnancy went badly.  And yet something went wrong for Joshua too.  Don't get me wrong.  This little boy is my world.  I didn't know the true power of love until he was born, my love for him consumes me, its strength is overwhelming at times.  He brings me such joy and honestly, I wouldn't change a thing about him.  And yet, things were not supposed to be this way for him.  I know it is not my fault.  Not really..  but there has been many nights when I have laid in bed awake unable to sleep and playing everything over in my mind.

  • Could my blood pressure have had something to do with this?
  • What about my wacky liver function test?
  • Could he have done this to himself?  He was munching on his umbilical cord during the 4D scan I had...  can a baby squeeze their cord so tight that it stops the blood flowing to them properly?
  • What about when I was 26 weeks pregnant and I was laying on the floor on my back and had a 4 year old fall over onto my belly?
  • Is it because I declined the Group B Strep test?
  • Is it because I declined the screening for Gestational Diabetes?  Should I have done those tests?  Would it have made a difference?  (I know it wouldn't have, but these are the thoughts that have gone through my head..)
  • Should I have known during my labour that something wasn't right?  When I was in labour, I did think to myself "If I feel like this, how can the baby be ok?" and I went and checked him with the doppler to make sure he was alright.  (This was prior to the midwives arriving)  His heart rate was fine when I checked it, so I didn't worry anymore...  but was that my sub-conscious telling me something was wrong?
  • What about when I was 29 weeks and went to the Hospital feeling unwell?  Was that when it happened?   
For what is is worth, we gave the doctors all of my blood results with my liver function tests etc in case there was any chance there was any link between that and what happened with Joshua.  We also told them that I'd declined the GBS testing etc.  We told them everything just in case any of it meant anything.  Although the doctors said they didn't think that the insult occurred during the birth, I have since been told by some of the other parents on the Yahoo group that seizures usually start 8 to 12 hours after the insult.  Joshua was about 5 hours old when his seizures started....  and my labour was 10 hours long. So it may well be that the insult occurred while I was in labour.  I don't think we will ever know.  I don't think anybody did anything wrong.  I wanted to have my baby at home, and when it became apparent that there was cause for concern, we went to the hospital.  Once we got to the hospital, the only way he would have come out any faster was to knock me out (I say that because I wasn't the most co-operative patient).  Josie told me she didn't think that was a fact though, because I did still push him out, despite having a bit of "assistance"  The hospital did do a review into my entire pregnancy and labour/delivery.  They do this anytime a baby has been compromised in some way to review their practices and see if something should have been done differently.  I don't actually know what their findings were, but in any case, I am ok with that.  I don't need to blame anybody for this.  Ultimately, every decision that was made came down to me, so if anybody is to blame, it is me.  But what's done is done, it is what it is and we can't change anything now.  
All we can do is love this little boy the best we can.    

There is a name for this...

I should mention that when we left the hospital after Joshua was born, I didn't know there was a name for this.  I knew he'd had seizures, and I knew he was brain damaged.  I knew it was caused by a lack of oxygen.  They told me that they didn't think it was from during the birth, but rather some time during the pregnancy, based on some of the different levels in his body.  They told me that despite all the monitoring they do in pregnancy these days, sometimes a baby can be compromised without us knowing.  I tried searching for things on Google looking for information about this...  things about seizures and things about brain damage.  But my searches were pretty useless.  I was finding information, but none of it was really what happened to Joshua.  It wasn't until Josie, my midwife asked me if I'd gotten a copy of Joshua's hospital discharge papers.  She had been sent a copy from the hospital.  I hadn't received a copy and to tell  you the truth, I never even thought about anything like that.  So Josie arranged a copy for me.  And there it was.
Principal Diagnosis:  
Hypoxic Ischaemic Encephalopathy Grade II.  
Other Diagnoses/Co-morbidities:  
1. Severe Hypoglycaemia 
2. Seizures  

So, there was a name for this!  The discharge papers also had the results of his MRI.

There is extensive restriction of diffusion within the peripheral brain throughout the cerebral hemisphere with relative sparing of the temporo-parietal regions.  There is also restricted diffusion within the left posterior thalamus.  There is increased signal within the cortex in teh same regions as the restricted diffusion as well as foci of reduced signal in the right occipital region consistent with haemosiderin deposition.  Appearances are consistent with extensive pseudolaminar cortical necrosis pattern of Hypoxic Ischaemic Encephalopathy.  There is a degree of moulding visible posterior to the vertex as well as a small scalp haematoma.  No extra-axial haemorrhage is present.  Ventricular calibre and position are normal.  The basal cisterns are preserved.

Holy cow!  I finally had some things to Google!!  Joshua was about 9 weeks old at this point and I was only just finding out what was actually wrong with him.
I googled Hypoxic Ischaemic Encephalopathy and while I found there was not a great deal of information, there was an one article I found, and oh my goodness, this is what happened to my Joshua.  Unlike all my other searches that didn't really turn up anything that was really on the money, this was actually what happened to us.  The article is here if anybody is interested.  It has a lot of medical jargon, but it is the best explanation I've found online.  http://emedicine.medscape.com/article/973501-overview

I also tried googling all of the things in his MRI results....  and basically, the conclusion I came to from that, was that his entire brain was F**ked.

Now that I knew what his diagnosis was, it struck me that I probably wasn't the only person in the world to ever have this happen to their baby.  And so, I set out to find other parents in this situation.  What do you know...  I found a support group on Yahoo for parents with children that have HIE.  There is even a facebook page for HIE!  And perhaps the best thing I came across, was a blog written by another mother.  And, she was Australian!  I read her blog and cried my eyes out.  Somebody understands me!  Somebody knows how this feels!  I had to contact her...  She gave me some great advice and perhaps the most inspiring thing of all is that her beautiful daughter Sophie, who has just turned 2 years old, is completely 100% fine.  It is not realistic to expect this for everyone with a HIE diagnosis, and many children are affected very severely, but it is wonderful to hear some positive stories too!
If you would like to see Claire's blog about Sophie, then this is the link: Sophie's Journey

Physiotherapy Assessment

It was a Friday that we'd seen the Doctor and on the Monday that followed, I got a call from one of the Paediatric Physiotherapists from the hospital.  They asked me if I could bring Joshua in the very next day for an assessment.  So I took him in, and we met Kelly and Tahnee, the two physios.  They were nice, I liked them.  They made a real effort to engage Joshua and he liked them too, and responded with lots of smiles.  They told me that they saw a lot of positive things with him and that overall he was pretty good but they did agree with the Doctor.  He had high muscle tone.  High muscle tone is sometimes referred to as spasticity.  When a muscle is very spastic, it can be so tight that it cannot be controlled voluntarily.  On the opposite end of the scale, there is low muscle tone, which means that a person is very floppy, and again, has very little control over their body and movement.  Between the two extremes, there is a huge range of possibilities.  They told me that they see tone like Joshua's in normally developing babies too, and that maybe the high muscle tone would be the only thing they see (as a result of the brain damage) and that it is possible that he might "grow out of it".  They said it would become clearer about the age or 9 or 10 months.  In addition to the high muscle tone, they noticed that Joshua was preferring to use his left hand over his right.  The tone in his right arm is slighter tighter than his left.  They booked me in to see them again before out next appointment in the outpatient clinic, which was in 2 months.  And they told me to work with him on grasping toys and reaching for things.  And to encourage equal use of both hands.  This could mean sitting him on my lap and tucking his left arm under my arm so he cannot use it and then encouraging him to play with toys with the right arm.  A week prior to this I'd actually gone out and bought him a selection of rattles because he was almost 3 months old and I'd decided that it was time to start working with him on grasping (this was before our appointment with the doctor) and within a week of seeing the physios, he was grasping things quite well.

Reaching for Toys on my play gym

Holding some Rattles


Second Hospital Appointment

So life went on for a while, and my days were consumed with all the usual things that make up your day when you have a young baby.  For the most part, Joshua didn't give me any reason to think about the prognosis that is looming over us.  He is doing everything he should be.  The fertility website I signed up to when trying to become pregnant is not just about charting your cycles.  It also has message boards, and I was part of a great group of women who were all expecting babies in May 2010.  And now we are the "May 2010 Mamas." We used to talk about our pregnancies, and now we talk about our babies.  This group keeps me grounded sometimes, because it gives me insight into exactly what other babies Joshua's age are doing.  Some of them are doing things he isn't.  And he is doings things some of the others aren't.  They are all growing and developing at their own rate, and that is perfectly normal.  Except Joshua isn't "normal" is he?
I got over the whole seizure thing, and decided that I didn't think Joshua was having infantile spasms after all.  (Though it does loom in the back of my mind that things like that could still come up in the future).  I was still measuring his head on a regular basis and feeling a little frustrated with it, as it clearly wasn't growing very much.
When he was 12 weeks old, we went back to the outpatient clinic at the hospital.  This time we were seeing the doctor that he was assigned to after he was born.  He is a consultant, which means he is supposed to be a bit of a smarty pants.  Now, Joshua's head circumference was on the 5th percentile.  He told us that maybe Joshua was just supposed to have a small head and that it was finding the percentile that it is going to stay at, and if it continues to grow and track along that percentile then all is well, he just has a smaller than average head.  However, if it continues to slide down the percentiles then "further investigation" would be needed.  So again, it was still a wait and see on the head.
During the examination, the doctor  felt that Joshua was a bit tight and that he had a poor grasp.  I had noticed a bit of stiffness myself, but he wasn't like that all the time, so I assumed that he was doing it on purpose.  That he was actively resisting me when I was doing things with him.  The doctor was concerned that he had high muscle tone.  He put through a referral to the Hospital's paediatric physiotherapists for an assessment.  Fantastic, now I have another thing to add to my list of worries!  

Six Week Check up and First Hospital Appointment

I was told that I should make an appointment with my GP to have a 6 week check up for both myself and Joshua.  I didn't really want to, and if it was just me, I probably wouldn't have.  But, I am a Mother now and I felt like I better do it for my baby!  So we went to see the Doctor.  I thought everything was fine and that at this point in time, Joshua was just like any other baby.  But the Doctor looked over the measurements that the child health nurse had done a few days earlier.  She put them into her computer.  She felt his head.  "Hmmmmmm".   She couldn't palpate his fontanelles very easily.  She noted that the coronal sutures were very prominent.  And she said his head circumference was small in proportion to the rest of his measurements.  We had a follow up appointment at the Paediatric Outpatient Clinic at the hospital a few days later, our first of many to come, so the GP wrote a letter detailing her concerns.  I spoke to her regarding my concerns about Joshua having reflux, and she put that in the letter too, and said she would leave it up to them to decide if he should be medicated for it.

So I went to the doctor thinking he was perfect and then came home with more to worry about.  I started googling.  And I discovered the word "Microcephaly".    Microcephaly is when the circumference of the head is more than 2 standard deviations smaller than normal for that person's age and gender.  It can be genetic, where a baby will be born with a smaller than normal head or it can occur when a child is born with a normal head circumference, but it then fails to grow normally.  A small head basically means a small brain, and this condition is associated with poor neurological outcomes.  Having said that, it is possible to have microcephaly and still be highly functional, much like a HIE diagnosis.  Nevertheless, I was worried.  Could he have microcephaly?  Could the injury to his brain mean that his head is not growing properly?  I looked at images of children with Microcephaly.   Some of them looked pretty normal (albeit with a small head) and others didn't.  It is hard to imagine your precious child looking like that.  What would the doctor at the hospital say about this?

We went for out first appointment with the Paediatrician at the hospital.  When she greeted us she said "Do you remember me?" And I was like "umm no" and she flipped through his file and said "Oh no, I wasn't actually directly involved with Joshua when he was in the hospital, but I knew his case".  So she read all the things that the GP had written in her letter and she had a look at his head.  She could feel his fontanelle and said it was still open.  She said the prominence of his Coronal sutures was just moulding remaining from the birth.  I asked her if that was normal....  he was 7 weeks old now...  isn't moulding supposed to be gone within a few days?  She told me it was normal.  At this time his head circumference was on the 15th percentile (after being on the 50th percentile at birth) so it was really just a case of waiting to see how it would grow.  She said we had until he was about 6 months to see what it was doing and if it didn't grow then they would do further investigation then to find out why not.  I felt better about it all after speaking to her.  I went there thinking he had something terribly wrong with him, but she didn't seem to think that.  But now my focus was on his head circumference.  I would measure it myself all the time.  I still do.   She agreed to put him on Losec for his reflux.  She said they don't like to medicate unless the child is losing weight or is in extreme pain.  I wondered how much pain a baby had to endure for them to consider it worth medicating.  To me, my baby being in ANY pain is too much pain.  She basically said she'd give us the medication to make ME feel better rather than Joshua.  I didn't care, so long as she gave it to me.  Losec can take a few days to start working.  5 days after starting it, he was much improved, no longer screaming and arching his back, not waking as often during the night.  It was worth it.  He was only getting one dose a day and it did seem like it wore off by the time he was due his next dose because he would get symptomatic again just before I was due to give it to him.  I thought maybe he needed to have it twice a day and but before I could speak to someone about changing the dose, he seemed to improve on his own and I no longer thought it was necessary.

The doctor had also asked me questions like "Have you noticed any lip smacking?" and I said No.  Then later I was thinking to myself "What does lip smacking look like anyway?"  So yep, I googled lip smacking.  I found videos on You Tube of a little boy who was having a seizure.  The lip smacking was part of his seizure.  It was SO subtle.  He had a seizure disorder known as 'Infantile Spasms".  So then I searched for more videos of infantile spasms, and found video after video of babies having these seizures.  They are barely distinguishable from normal jerky baby movements, except that they are repetitive.  I freaked.  I was convinced Joshua must be having seizures like this.  I researched infantile spasms and found out it is a terrible form of epilepsy and although most children grow out of the seizures, they are left with severe neurological dysfunction.  Sometimes the seizures are so terrible that surgery is done to remove half of the child's brain.  So after that, every movement Joshua made, I was freaking out.  Is he having a seizure?  I would say to Rod "Look at him, look at his leg, is he having a seizure?"  And Rod would say "No, he is moving his leg.."  
SO much to worry about...      



Sunday, November 21, 2010

The dreaded child health nurse!

As part of the homebirth Service, the usual post natal care when your baby is born at home is that your midwife will come and visit you every day for the first week, and then once a week until your baby is 6 weeks old.  Even though Joshua ended up being born at the hospital, my midwife Josie was a huge support to me.  She came and visited us many times at the hospital and was always calling or texting to see how things were going.  And when we came home, she visited us once a week just as she would have if we'd had a homebirth.  She'd check my blood pressure and make sure things were ok with me, and she'd weigh Joshua and see if we needed any help with feeding etc.  All the normal things.  I love Josie, she is the best midwife ever.  

When you have your baby at the hospital, they send your details to the Community Child health nurses.  (They also take over from the homebirth service once your baby turns six weeks old).  They obviously got something as soon as Joshua was born, because we got a phone call asking if they could come over and see how we were going.  Rod informed them that our baby wasn't even home from the hospital yet, so they said they'd call back in a few weeks.  The very next day after we got home from the hospital, I got a call from one of the nurses, asking if she could come to our house.  I thought "Really, you have to be kidding me, he has just been in hospital for 12 days, the last thing I want to do is see another nurse!" so I said "what for?" and she said they come and weigh the baby etc and so I told her that I was with the homebirth service and that I was still seeing my midwife until he was 6 weeks old.  So she said she'd be in contact with us then, would I call her or she should call me?  I told her either one, and she said "I will call you then" and I thought "Good choice, because I don't think I would have called you!"  Sure enough, when he was 5 weeks old she called me back to make a time for the following week when he was six weeks old.  She came over with another nurse, and they came in and sat down on the floor in my loungeroom with me, where I was with Joshua.  And then she started with the 20 questions.  I was was wondering why she was asking me all these things because I thought they just weigh the baby and see how the baby is, and not go nosing into the Mother's business, but apparently that is also their job.  She was asking me things like "Was this your first pregnancy?"  And I said "No, I had a miscarriage before this one" and she said "What year was that?" And I said "Last year" and she writes it down and says "And how do you feel about that?"  and I was thinking what kind of a question is that?  What does she expect me to say?  "Oh it was really good thanks, I am glad I had one?"  so instead I said "Um fine".  And then she starts on Joshua.  "So, Joshua had a rough start didn't he?"  I said "yeah" and she hands some paperwork to the other nurse and said "Here is Joshua's history" for her to read.  Which I found kinda rude actually, like it was some secret info, and I wanted to snatch it off her and read it myself.  But anyway, then she says "So, how was the birth?" And I said "Pretty crap" and got all teary.  She then says to me "Why are you crying, is it just because you are tired?"  Are you serious?  My baby is six weeks old, was in intensive care because he is brain damaged and probably isn't going to be normal, pardon me if the emotions are still a little fresh!  She kept on questioning me, asking me if my husband abuses me, what kind of support I have blah blah blah.  And then moved on to measuring Joshua.  Not only do they measure them, but they also do a "developmental check".  She says to me "Does he make eye contact with you?" And I said "Yes".  But do you think he would look at her?  No.  Not at all.  So she says "I need to come back and see you again because I am just not getting that mutual gaze with him,  I will come back in 2 weeks and when I come back I am going to get you to do this depression survey, here is a copy of it so it won't be a shock to you" To which I told her that I had seen it because I had already done the survey a couple of times because the homebirth service has you do it during your pregnancy.  She said "Oh and how did you go?" And I replied "Fine, I said I was happy" and she said "Oh so did you just lie then and tick any box?"  WHAT!  I was pregnant when I did it, I had no reason to be upset then!  So needless to say, this nurse annoyed me a great deal.  After she left, I emailed Rod and told him how much Joshua weighed now and how long he was and said "I think that nurse thinks I am a basket case because I got upset when she asked me how the birth was!"  No sooner had I sent that email when my phone started ringing.  It was Meryl, one of the midwives from the Homebirth Service (Josie had that week off).  She said "I just had a phone call from Jane, the health nurse that just came and saw you, because she is worried about you"  I told Meryl I was fine, and she said she thought it was strange because she checked Josie's notes and  Josie had said I was doing well.  I said "Yeah, I am, everything is fine" and she told me to call her if I needed to talk and wanted to talk to someone that knew what had happened and that Josie would be back next week and would be in touch with me.  I thanked her and said personally, I am not sure what she was expecting by asking the questions she did, and that I would be more worried about someone who had been through what we had, if they were NOT emotional, because at least I was getting it out!
So not only did this nurse do that, but she also made me paranoid for a good week about Joshua and his eye contact.  I was sure he made eye contact with me, but after he wouldn't do it with her, there were all these times that I would try and get him to make eye contact with me and he wouldn't!  So I started freaking out.  Though I googled it, and it said that it was a 6 to 8 week milestone.  Well, he was dead on 6 weeks so maybe he was just a little young.  And sure enough, within a week he was doing it ALL the time.  When she came back to see us when he was 8 weeks old, he gave a big smile to the silly cow!  She had also had a big chat to Josie over the phone, and Josie told her where to go for me (nicely I am sure!) so the nurse decided she wouldn't be bothering me anymore, unless I called her.  No chance of that!            

He is a real boy!

Joshua never cried while he was in the hospital.  Seriously.  I was starting to think that maybe the part of his brain that controlled crying was damaged and that he couldn't cry.  I would ask the nurses "Have you heard him cry?" and they would say "No actually.. he is a very good baby".  He was also so used to getting his feeds on a 4 hour schedule that even when he was allowed to demand feed, he pretty much sat on the 4 hour mark.
That is, until he came home and realised he was a real boy!  Clearly he decided he needed to make up for lost time and would cry ALL. THE. TIME.  He also wouldn't sleep, (at night that is...  he did sleep during the day to start with) and was waking up every hour or so.  I ended up sleeping in the loungeroom with him.  I realised that he was used to the sounds of the hospital, which was never totally quiet or totally dark, so I kept the TV on, and gradually made it quieter until I was able to turn it off.  I spent several nights "sleeping" on the recliner with him on my chest because as soon as I'd get him to sleep and put him down, I would go and lay down myself and he would start crying again.     I always said when I was pregnant that the thing that worried me the most about having a baby was the lack of sleep.  Taking care of a baby didn't bother me, I'd done that plenty, but those babies always went home at the end of the day and I got a full nights sleep!  Sure enough, it was the hardest thing about having a newborn.  And it seemed like I was the only one who could settle him, so although Rod would try sometimes, it was short lived.  By the time he was 3 weeks old, the decent day time sleeps he was having turned into naps of 40 mins at a time, and he was still getting up every 1 to 2 hours during the night.  I was EXHAUSTED.  He screamed everywhere....  we'd take him in the car and he would scream so much he was red in the face and covered in sweat.  We went to a friend's wedding and out to dinner and it was awful.  He was one high maintenance little dude and I pretty much felt like I couldn't go anywhere or do anything for fear of having a screaming baby.   Otherwise though, he just seemed like a normal baby.  (Some "normal" babies are a pain in the bum too, I know!)  He seemed to be really colicky, and I started trying things like gripe water to try and help him.  I also ordered a book called "Save our Sleep" by Tizzie Hall.  It has routines for babies from Birth to age 2 with the ultimate goal of getting them to sleep from 7pm to 7am.  At this point, I was willing to try anything to get some sleep.  I started using her routines when he was 5 weeks old and the changes in him were almost instant.  Instead of screaming all evening until I finally got him to sleep late at night and went to bed myself, he was going to sleep at 7pm.  He was staying asleep until I went to do his dreamfeed before I went to bed.  He was only waking 2 to 3 times a night to feed (which is tons better than every hour!!)  He was still only sleeping 40 mins at a time during the day and he was still a whinger when he was awake, but things seem better when you are getting some sleep!  I was also beginning to think that he had reflux.  He seemed to be in pain, would pull off the breast screaming and arching his back.  Then his "voice" started sounding croaky like he had a sore throat and I was convinced then that it was reflux and that the acid must be burning his throat.  I decided that I would bring this up at our six week check up.    

Step by Step

In the beginning, I was almost scared to go back and see him because each time I did, something else was wrong.

In the NICU - The towel on my head is try and get the dots for the EEG to stick

Mummy at my bedside


But after a couple of days, things slowly started getting better.  They got his seizures under control, he was able to come off the ventilator and breath on his own, and he was able to start getting milk feeds through a NG tube.  Slowly but surely, things were improving.  They began to wean him off all of the seizure medications and slowly he started waking up (the medications have a sedative effect).  He remained on the EEG to monitor any seizure activity, and he was still on all of the monitors.  I hated it, they'd freak me out.  I couldn't touch him without looking at the screen and seeing what they were doing and worrying about his breathing, or looking at the mysterious waves on the EEG and wondering what they meant.  He was moved out of the NICU and back into the regular Special Care Nursery where he was placed in a humidicrib.  This seemed to be worse to me, because in the NICU he was on an open bed where I could easily kiss him and touch him (and he could be quickly accessed by medical staff in an emergency), and now there was this barrier between us, but they assured us that this was a 'downgrade' and that it would keep things nice and quiet and cosy for him to start getting better.

My downgraded bed in the Special Care Nursery

Having a "feed".  Breast milk via NG tube

 When he was 5 days old, we got a nice surprise.  We went in to see him that morning and he was being moved into an open cot.  The nurses were getting things ready and they said "Here, hold him while we do this".  I nearly cried, it was the first time I'd gotten to hold him since the morning he was born!  He also had his eyes open for the first time since then too!  Later that day,  Rod got to have his first cuddle ever.  

Mummy's first cuddle since the morning I was born
Hello you!  Nice to see you awake!
Daddy's First Cuddle
 This was also the day that he had his MRI.  We went with him and then we anxiously waited for the results.  It was a day or two later before anyone talked to us about it, even though I kept asking the nurses about it.  (Of course, the doctors have to be the one to talk to you about such things, and we seemed to keep timing things badly and miss them)  Finally, they took us off to another room and so I knew that had to be bad.  It was one of the consultants, plus one of the nurses that had been looking after Joshua.  I think she was supposed to be there as some kind of comfort to us.  Then the doctor told us:  "The MRI showed extensive injury to the brain, and we would not expect him to be normal.  Of course there are always miracle babies that have something like this and nothing wrong with them, but we would not expect that for him".  I started crying of course and I said "Well, what does that mean, what do you think is going to be wrong with him?  Will he be physically disabled, just have a bit of a learning disability, what?" And she said "We don't know, there is no way for us to know, all we can do is watch him as he grows and see if he meets all of his milestones.  Right now, he is a newborn baby and all we expect a newborn to do is lay around, it won't be until he should be doing things like smiling, or walking that we will know if he cannot do those things.  The process now is go through everything.  You need to be able to breath on your own or you will die, and he is doing that.  The next thing is that he need to be able to feed.  We know he has a good gag reflex, but we haven't formally assessed his suck/swallow so we will need to do that before he can start feeding orally.  Once he is feeding well then you can take him home but we will be taking things very slowly and we won't rush him."  So that was that....  our precious newborn had a severe brain injury and was not going to be normal.  I went back out to his bed, picked him up and sat down with him and cried my eyes out.  We left the hospital that day to go home and digest the bad news we had been given.

The following day, we went into the Special Care Nursery and in the place his open bed had been was a humidicrib.  My heart sank, had he gotten worse over night?  I walked over to the bed and realised the tiny baby in it was not mine.  A nurse said "Your little boy has been moved to General Nursery!"  This was great news, as they always told us, the closer you get to the door the closer you are to going home, and General Nursery was the last step in that direction.  So we went into the General Nursery and the nurse told me she was hoping he could start on suck feeds today, but she was just waiting for the Doctors to come around and give the OK.  When the doctor came, he put a finger in Joshua's mouth and he began to suck on it.  "Yep, he has got a good suck, give him a try!"  (Gee, I could have told you that!)    So the doctor proceeded to give me a big speech about how I shouldn't expect too much, and not to worry about how much milk he was getting, to just think of it as a nice bonding experience between us and good practice etc.  So I put him to the breast, he latched on and sucked away for 15 mins.  The nurse said "Aren't you a smarty pants!?"  So then they told me that just because he fed well the first time it doesn't mean it is going to go like that the next time and not to be upset if it doesn't.  He did alright though, and we really didn't run into any breast feeding problems, which I know I should be very thankful for.  To begin with, I would breast feed him and then he would receive a top up via the NG tube.  

Little man after he was moved to General Nursery

Having a top up feed via the NG tube
 Things moved pretty quickly now, and soon he was allowed to start demand feeding and then his NG tube was removed completely.  I went in on my own on a Saturday morning, because there were rules that no more than 2 people could be in the nursery per baby including the parents, if people wanted to come and see him, one of us would have to leave so they could come in.  So Rod stayed home this morning and I had a lot of visitors come in. My brothers and girlfriends and my best friend Holly all came up to see him.  When I first arrived that morning, they told me they were considering moving him to the general paeds ward, where I would be able to spend the night with him and work on exclusively breast feeding him.  If he put on weight there, he would be allowed home.  So later that day while Holly and I were sitting there having a chat, the Nurse came and said "3pm, he is going to the kids ward, what are you going to do?"  It was 2pm, so I was like Holy crap!  And I raced home, threw a bag together of things for myself and threw a bag together of things for Joshua, and raced back to the hospital with Rod. We arrived just as they were wheeling him out of the Nursery!  So the kids ward was a bit different.  In a way it was much more relaxed, because you could pretty much take your baby anywhere you wanted, even outside if you wanted to (I didn't, because everyone sits around smoking down there anyway) and they had a family room with a TV that you could go and sit in instead of staying in the room (which was shared with about 5 other babies and their mothers, with no curtains or anything between) And in some ways it was like a third world country.  There was only one toilet and shower right down the end and it wasn't the greatest.  It was a bit hard for me, as I was still experiencing post partum bleeding and the facilities really weren't adequate for changing pads etc.  But I made do and I had decided upon entering the kids ward that I was not leaving unless Joshua was coming with me.  So I stayed there for 2 nights with him, until finally he was discharged on Monday 31st May.  I nearly had a mental breakdown waiting for the doctors to come around that day and say if it was ok for him to go home.  And our room was the very last room on the ward they came to that day.  I was dying with anxiety.  But finally they came, and said we could take him home. I called Rod (who was at work) and he couldn't have gotten there fast enough.  Joshua was 12 days old when he came home, and when I say that now, it doesn't sound like very long at all, but when we were living it, those 12 days seemed like months!

Free at last!  We're going home!

In his car seat for the drive home



And the Roller Coaster begins...

So I had gone to get settled in my room on the maternity ward, and Rod had gone home.  The hospital midwife came in and told me that Josie had already called to see how I was doing (she had left while I was in the nursery with Joshua.) I was busy texting friends and family letting them know the good news that our boy was here!  While I was doing this, a doctor came over from the Special Care Nursery and told me that Joshua's blood sugar was very low so they had started him on a glucose drip.  They had taken it while I was in there with him and it had come back low but they thought it must be a mistake because there is no way he could have had blood sugar that low and not have been symptomatic (or so they thought).  So they had retaken it, and it had come back only slightly better.  So that didn't sound too bad anyway, he'd have the IV and it would sort it out.  I went to sleep.

About an hour later I was woken up by the doctor, who told me that Joshua had a seizure and that he had stopped breathing, so they had to resuscitate him and that he'd been given an anti seizure medication (Phenobarbital).  They thought it was probably because his blood sugar was so low, and that now he was on the IV to fix that up, he probably won't have anymore.  I cried when they told me this, but again, it didn't sound too terrible.  Of course it wasn't good, but it didn't sound like the end of the world or anything.  I didn't want to go back in to see him though until I had Rod with me.  A short time later though, Josie came back.  She asked how he was and I started to cry and told her that he had a seizure.  She came with me to go and see him.  By this time, he had been moved into the Neonatal Intensive Care Unit (NICU) which in reality, is just another section of the same room in the Special Care Nursery.   He was ok, he was stable and I stood there at his bed and was touching him etc.  While I was doing that, the alarms on his monitors started going off.  The Nurse came over, looked at him and said "This baby is not breathing!"  I stood back with Josie while several doctors and nurses surrounded him, resuscitating him.  Once he was ok, I returned to his side again.  Then it happened again.  They decided that he needed to be intubated with the ventilator, so that if this kept happening they wouldn't need to keep resuscitating him.  I was just standing there crying, so Josie took me out while they were working on him.

I let Rod know and he came back up to the hospital, and we went to see him.  This time, my baby was full of tubes and wires.  He had been connected up to the EEG which was monitoring for seizure activity and there was lots of it.  He was ventilated now so we didn't have to worry about him stopping breathing, and he was breathing above it for the most part.  They said they'd done a CT scan and it was normal, except for a bit of swelling on the brain, and that they'd know more once the swelling went down and they did an MRI as it shows more detail.  They'd had to give him more medications to try and bring the seizures under control and they were saying things like, that the best outcomes are when the seizures can be controlled within a couple of days up to a week, but that any longer than that and the outcomes are not as good.  They even said the word "Death".  We really had no idea what was going on, and every time we went in there, we seemed to be getting worse and worse news.  All I could do was stand beside his bed and cry.  I had also never seen Rod cry until now.

In amongst all of this of course, I had to start expressing.  This turned out to be something I was good at, and I was getting more milk than the average cow.  Of course, it was colostrum to start with and I was quickly filling the syringes they'd given me, first small ones, and then big ones and then I moved on to small containers.  At first I did it by hand, which they recommend you do until your milk actually comes in.  Because I was getting so much though, they said I could try the pump, but it wasn't very good, I was getting more with my hands, so I kept doing it that way.  Liquid gold for my precious baby.  He couldn't have any of it yet, except for a little on his lips when they did his cares, as they didn't want to stress his body out.  He was getting all his nutrition through the IV, but I was getting this milk going, so that when he was ready to have it, I'd be ready to give it to him.

I spent that first night in the hospital, and all I could do was lay in my bed and cry.  It wasn't a private room as they don't have them at this hospital unless you are really sick, so there was another girl with me, with a curtain between us.  She hadn't had her baby yet (thank goodness, I would have flipped out if I was sharing a room with someone that had there baby in there with them!) but was having some other issues with her pregnancy.  I didn't want her to hear me crying though, so I'd just lay there and cry quietly to myself.  I wondered what I had done for this to happen to me.  I just wanted a baby, and first I had the miscarriage and now I have a baby but he is "broken." Why is life so unfair?  There are so many people out there who smoke, and drink and take drugs through their pregnancy and yet their babies are born perfectly healthy.  There are so many people out there who didn't even want to get pregnant and don't even want their babies and treat them terribly, and yet they are blessed with perfect children.  What did I do for this to happen to me?  I didn't even know what this was, we didn't know what was wrong with him and we didn't even know if he was going to live.  It was not supposed to be like this.  I was supposed be at home, after having my baby at home and cuddling up in my own bed with my baby and feeling blissed out and happy, not laying in a hospital bed with my baby in intensive care.

Through the night the nurses kept coming to check on me, I didn't get much sleep that night but each time they came in I would pretend to be asleep.  I didn't express at all that night and I expected that the nurses would make me, but they didn't, they left me be and commented in the morning what a good sleep I'd had.  I told them I wanted to go home.  They said "Are you sure, you just had a baby, most people stay 3 days" but I said No, I wanted to go home.  They offered for us to see the hospital social worker to help us at this "difficult time" and I said No, I didn't want to.  They pushed for it, but I said "Can they make my baby better?  No? Then I don't want to see them"  I had to wait for a doctor to come and see me and give the OK, but I was discharged at lunch time that day and went home.  It was the best thing for me, to be able to sleep in my own bed, and besides, Rod wasn't very good at bringing me the things I needed to the hospital  (like he brought me a skirt but no top, brought me a bra that hadn't fit me in months etc) So I was able to go home and feel more like a person again.  We only live 10 minutes from the hospital, so not too far.  And so we started the daily grind of going back and forth from the hospital.

My poor little baby with all his bits and pieces - 2 days old


Close up of his face - He became quite puffy due to all of the IVs

                

Joshua's Birth Story

For the last few weeks of my pregnancy, I was having niggling pains on and off and I was constantly getting my hopes up that maybe I was going into labour.  My due date was Monday, May 17th.  It came and went and I was still pregnant.  On Wednesday the 19th, I woke up to something new.  There were some streaks of blood in my mucous.  You needed a magnifying glass to see it, but it was there and it made me happy!  FINALLY, maybe something was happening!  I had to go to the doctor that day, regarding all the blood pressure stuff, and I was sitting in the waiting room having mild contractions.  They were nothing different to the ones I'd been having for the past few weeks though, so I didn't really want to get my hopes up.  The afternoon was pretty uneventful, the pains did not turn into anything but the amount of blood in my mucous was increasing over the day so that it was stained pink rather than just being a few almost undetectable streaks.  Josie said it definitely sounded like I was losing my mucous plug.  That evening, Rod and I decided that we would walk up to the shop and that Rod was going to make a spicy laksa for dinner. I thought this was a good idea, and hoped that the walk and some spicy food would kick me into labour.

Well, as soon as we got home from the shops at 6pm, I went into labour.  The pains were different to the ones I'd felt before and they were coming about 5 mins apart.  I hoped that this was really labour, because if it wasn't I was going to kill myself (not really!  But they were bad enough that I didn't want to be going through that for no reason!)  I didn't feel like eating laksa now, so I just walked around, bounced on my ball and had a warm bath.  The pains continued, so I was pretty sure I was in labour.  I gave Josie a call at about 8pm to let her know I was "dying".  She asked me if I wanted her to come over.  I told her that I didn't feel the need to have someone come over and watch me while I was in pain.  LOL  So she told me to call her back in an hour or two to let her know how I was going, or to call if I felt that I needed her to come over.  I went out and told Rod that I had called Josie.  He asked me why.  I said "To let her know I am in labour".  He said "Are you?"  Yes honey, that is why I have been in pain for the past few hours.  Nothing changed over the next few hours.  I didn't feel like it was getting worse.  The pains were still 3 to 5 mins apart, but they weren't getting worse and everyone said you knew you were in labour because the pains would get longer, stronger, closer together.  So I thought maybe I still had a long way to go, because it just didn't seem to be getting worse.  I was coping quite fine by walking around, sitting on my ball and using my heat pack on my back.

At 10pm, I thought I better call Josie back as it was getting late.  I had no idea how much longer this would take and I didn't know if she really needed to come over yet, but she decided that she would.  Her and Meryl arrived at about 11pm.  I was still doing my thing, walking around with the heat pack on my back and sitting down on my ball between contractions.  Rod started getting my birth pool ready, and by about midnight, I got in.  Things did start to intensify a bit once I got into the pool.  I think I was thrashing around in the pool like a harpooned whale.  All the while, Josie was periodically checking the baby with the doppler.  After some time, it became apparent that his heart rate was dropping during the contractions.  They asked me to get out of the pool so that they could see how things were going and how close this baby was to being born.    This was my first vaginal examination of the pregnancy and I HATED it.  In any case, it revealed that I was fully dilated but that the baby was still fairly high in my pelvis.  My membranes were still intact.  Towards the end of my time in the pool it was starting to dawn on me that my body had started pushing involuntarily, but since this was my first time doing this, it was taking a while for me to get my head around things.  So now I was on all fours on the futon and I was trying to push.  I felt like I was a pushing failure, and that it was doing NOTHING.  Meryl suggested that I go and sit on the toilet because sometimes that can help, so I did that.  And I pooped.  But I didn't have a baby.  This was pretty much a last ditch effort because they had decided that we should go to the hospital and they were rushing around getting things ready to go.  Naturally, I was trying really hard to push now because I didn't want to go, but that is where we were at.  This baby didn't seem like he was coming out soon, so we had to go.

I was on my knees on the floor of the car on the front passenger side, pushing all the way to the hospital.  When we got there, a security guard came rushing over with a wheelchair, but I wanted to walk, so walk I did, with Rod on one side and Josie on the other, stopping every few steps and pushing with all my might.  By the time we got up the lift and into the delivery suite, I was starting to feel the much talked about "ring of fire."  The walk had done me good and he was much lower now.  They strapped the monitors to me while I was standing up holding onto the bed pushing, and his heart rate was not good.  It was dropping down into the 80s during a contraction. They got me up onto the bed to see what was going on.  The doctor put her fingers in and said "Look, see where my fingers are, the head is right there, push it out!"  (What do you think I have been trying to do?)  They told me that this baby needed to come out right now, and much to my disgust, an episiotomy was done and Joshua was born with vacuum assistance.  Rod was practically passed out on the floor by this time, so he didn't cut the cord.  Joshua was taken over to the paediatricians who were there waiting.  I couldn't see him, the doctors had their backs to me while they were working and I hadn't heard him cry.  I was thinking, aren't I supposed to hear him cry now, and I said "Is he ok?" But nobody answered me.  It felt like ages to me, but I don't think it was very long before I heard him make a noise and he was brought over to me.  He was placed on my chest and the doctor was stitching me back up.  I was offered pain relief when I got to the hospital, but I refused it, except for a local anesthetic for the slicing and stitching.  I think that was actually the worst, most painful part of the entire ordeal!  (the needle that is!)  So Joshua was laying on my chest while I was being stitched back up, and his breathing was a little noisy, so they decided that he should be taken to the Special Care Nursery for observation, particularly as there had been meconium in the waters.  So Rod went with him, while they finished up with me.  I had a quick shower and changed into a hospital gown (as I had no other clothes with me, since the hospital trip wasn't part of my plans and I didn't pack a 'just in case' bag because I was trying to think positive!) and then I went into the Special Care Nursery to see him.  They told me he was doing really well, and that he should be able to be in my room with me in a couple of hours.  The nurse said that we may have to stay in the hospital for 24 to 48 hours because the doctors may want to give him some antibiotics due to the meconium, but he was doing really well.  I sat down to give him a cuddle and he started looking for a feed, so we had our first breast feed.  Things hadn't gone to plan, but everything seemed to be ok.  I stayed with him for several hours and then decided I'd go and try and get some rest, as by this time I had been awake for over 24 hours.  Rod decided to go home and do the same and would come back in a few hours with some clothes and other things for me.

Joshua Bevan Shepherd
Born 20th May 2010 at 4:03am
3510gms (7lbs 11oz) and 51cm (20in) long

Being given oxygen after he was born

When he first went into Special Care for monitoring

A cuddle with Mummy

Our first breast feed








            

My Birth Plan

I was planning a Home Birth.  I felt (and still feel) that a natural birth is the best thing for both Mother and Baby, and I had a lot of faith that my body would be able to do what it needed to do.  In Darwin, we have a government run home birth service, where a team of midwives provide prenatal care and attend the births of women wishing to have their babies at home.  I had called the home birth service when I was 5 weeks pregnant and spoken to a midwife named Jane.  Jane came over a few weeks later and talked to Rod and I about it, and we were happy that this was what we wanted to do.  (Well, Rod was happy to let me do whatever I wanted to do!)  My family was not overly keen on the idea, especially as my mum had a lot of difficulty when giving birth to me, She had a small pelvis and I had to be born using forceps and vacuum extraction.  She did not attempt a vaginal birth again when having my two younger brothers.  A lot of people I spoke to thought I was a bit crazy, especially when they found out you cannot have drugs for pain relief when you are at home.  I was much more afraid of the drugs (especially an epidural) than I was of the pain though!
Jane was nice, and I had my first proper appointment with her when I was 15 weeks pregnant.  At the appointment, she pulled out her doppler and said we could try and find the baby's heart beat but that we might not find it that early.  Of course, by that stage, I was an absolute pro at finding it and told her exactly where to look!  :)

The idea is that you see the same midwife throughout your pregnancy, and then in the last few weeks you meet a second midwife from the service who will also attend your birth along with your primary midwife.  Unfortunately though, Jane had some health problems that meant she was unable to keep working with the homebirth service, so at 29 weeks, I met my new midwife, Meryl.  Meryl was different to Jane, but I liked her too.  She was older and had a lot more experience to draw upon.  Not that I thought Jane was not experienced enough, but Meryl just seemed wise :)  I am pretty sure Meryl thought I was a nut case though.  From the time I had my first appointment with Jane, my blood pressure had been on the higher side, but this was pretty normal for me as it tends to be elevated whenever other people take it.  (White coat hypertension)  I did have a blood pressure monitor at home that had belonged to my Dad, so generally I would take it myself before my appointments so that if it was elevated I could say, well this is what it was before you got here.  This particular day though, I took it before Meryl was due to arrive and it was pretty high.  I tried to lay down and relax for a while, and then took it again.  It was still high.  By the time Meryl got here, I was having a bit of a freak out.  She was able to talk me down and by the time she took it, it was not as bad as what I had been getting.  Phew!

A few days later though, I woke up in the night feeling unwell.  I felt really dizzy, and my vision was blurry.  Initially I thought perhaps it could have been due to the position I was sleeping in and that the weight of the baby was on a nerve or affecting my blood flow.  I managed to go back to sleep for an hour, but when I woke up again, I didn't feel any better.  In fact, I felt like something was really, really wrong with me.  I took my blood pressure and it was higher than usual so we went up to the hospital and were sent straight up to the delivery suite.  They took my blood pressure and it wasn't too bad (pretty much what the homebirth midwives normally get) but they hooked me up to the monitors to check how the baby was going, and they also took blood and urine samples to rule out pre-eclampsia.  The baby was great, moving all over the place and my blood and urine came back normal.  So they sent me home and told me just to keep an eye on my blood pressure and if it got high again, then to come back in.  It was a once off, I never felt unwell like that again, but now I was well and truly paranoid about my blood pressure.  I REALLY did not want to have my baby in the hospital but I was so worried I was going to end up with pre-eclampsia and that I would have no choice, that I would be forced to go to the hospital, that I would have to be induced due to high blood pressure and the dreaded cascade of interventions would happen to me.  Induction = Epidural = Failure to progress = C section.  The whole thought of it freaked me out.

So after Jane left, they were looking for a new midwife to replace her at the homebirth service.  Meryl was going away on holidays just a few days after my due date, and being my first baby, the chances of going over were pretty good, so she thought it would be best to assign the new midwife to me as my primary midwife and that she would be my second midwife if I went into labour before she went away.  So at 36 weeks, Meryl came over with my new midwife, Josie.  I liked Josie too, so I wasn't too bothered about all the changes in midwives.  However, when Josie took my blood pressure that day it was BAD.   About 150/100.  AUGH!   Thankfully, by this time Meryl knew I'd be freaking out, so she left it and told me to take it myself later on and to text them and let them know what I got.  When I took it later, it was higher than I was typically getting in the past, but no where near as bad as what it was when they were here.  From then on though, it was high like that everytime someone else took it.  Once I hit 37 weeks (which is considered full term and alright to have a homebirth) I practically prayed to God every day that I would go into labour.  I just did not want to have to deal with all this high blood pressure stuff, I just wanted to have the baby and be done with it.

Like many other pregnant women, I was trying all the tricks to get things going...  walking, sex, spicy food, red raspberry leaf, evening primrose oil.  I just wanted my homebirth with no drama!!  Come on baby, just come out so Mama doesn't have to deal with all this stuff!  Apparently, he wasn't listening though.  I had to go and see the Doctor for a second opinion about everything.  Of course my blood pressure was high for her too, but again, she tested my urine and there was no proteins.  She sent me off to have the blood work done to rule out pre-eclampsia (again).   It all came back fine for pre-eclampsia, but there was some anomalies with my liver function test.  However, the levels that were out, can be out due to pregnancy so it was likely that was the reason.  In any case, I had to repeat the blood work.  I was annoyed with the whole thing, I just wanted to have a baby and not have to worry about all these things, and I wanted to have my baby at home!  All of this stressed me out a lot, because I had no control over it and it had the potential to take away the birth experience that I wanted.   The doctor said though, that she thought I was ok and I could go ahead with the homebirth.  I had everything all ready, a birthing pool, a big exercise ball, some heat packs and a few other random things.  I didn't know what it was going to be like, or what I would want during labour so I tried to cover all my bases.  I bought "The Pink Kit" and read another book about Birth Skills to try and prepare myself to cope without pain relief as best as I could.  I was ready, and aside from the blood pressure issues, I was not at all anxious about the impending birth.  I knew it would hurt a bit, but I didn't think it would be anything I couldn't handle.  Bring it on!