Bumbo

I have been procrastinating about putting Riley in the Bumbo. The instructions say form 3 months and even though she is almost 4 months she seems too little. Then everyone on the October parents group started putting their little ones in the bumbos. They are all younger than Riley so figured it wouldnt hurt, even if it was only for a few seconds.

Well how wrong was I. She loved it, obviously would have given her a whole new perspective on things being able to sit up without Mum or Dads arms around her! She done really well in it too, lasted quite sometimes before her head got too heavy for her neck LOL

Merry Christmas 2009

Here is our family Christmas photo for 2009. A year with no tears, no tantrums!! I am sure next year wont be the same story, Riley will be 1 and i am sure the man in the red suit wont be someone she will want to sit with!

From L - R we have Jessica, Amelia, Riley,Jack, Emily, Ethan and Lauren

First paed appointment

Riley had her first paed appointment yesterday since being discharged from hospital.

She is doing really really well, so well that we do not need to see him again for 6 weeks. Generally he likes to see them more often but she is far too well to be seeing him all the time (yay a Dr who doesn't see $$$ signs!)

Her new stats at 5 weeks old (38w6d corrected) were

Weight - 2960g (she was 3kg on our scales)
Length - 48cm (she has grown 6cm in 5 weeks
Head circ - 33.5

He gave her a good check over and since she is doing so well and looks nice and pink he isnt going to take any bloods. There is no point taking blood from a pink baby to check for anaemia....yay because i was really dreading taking her at this age to have blood taken. That being said if she does start to look pale/show signs of anaemia then we are to go back and get a bloods referral.

So it is all good....am very happy to get a clean bill for the first appointment - i was doing my head in worrying that all wouldn't be good!

5 weeks old

Time is flying and Riley is now 5 weeks old! Thought it was about time i got my act together and took some photos of our little girl so we can finally put her birth announcement in the local news paper....now i just have to figure out which one to send to the paper.

Riley and Brady the Born Early Bear

AustPrem have the most gorgeous teddy bear. We bought him for Riley while she was still in the hospital but we decided to keep him at home until Riley came home too...cant exactly trust that he would have still been there after we left him!

So here is Riley at 3 weeks old with her Brady Bear (and a token cute baby shot)







You can buy a Brady Bear from here http://www.bornearly.org.au/shop/

Coming Home

At exactly 3 weeks old we were able to bring Riley home! It felt like forever, even though it was only 3 weeks and 1 week less than when Ethan was born this time the whole journey was much more stressful and exhausting. Fighting all the way thorugh SCN probably didnt help either and of course we left on a really high note (LOL). Once again we had to fight to get her home, one nurse decided that she HAD to be on 4 hourly feeds. There is no protocol on that, she just decided that was what had to happen. Apparently they spoke with Rileys paed who apparently said she had to stay for another 48 hours to go to 4 hourly feeds - now i say apparently a lot because we are not so sure that he would have said that. Anyway, after a very blunt phone call with the NUM we received a return phone call saying Riley could come home and the paed didnt need to see her for 2 weeks! Major turn around, if he was cioncerned i am sure he would have wanted to see her much sooner than 2 weeks down the track - well actually 16 days but who is counting ;-)

But this is a positive entry. We have brought our little girl home to be with her family where she can thrive and be loved!

Arrival Day

September 10, 2009.
Today is Rileys arrival day. I spent the night in hospital in preparation for todays c/s, so all the usual ctg and blood pressure stuff. But for lots of reasons I wish I had of just stayed home and been able to go to peri-op on the day because it is tough being alone the night before you know your baby is going to arrival, all I wanted was to be near Allan.
So I was given an approx time of going to theatre of 11-11.30am. For some reason I took this and thought it would be true. Somewhere along the line I obviously wasn’t thinking of Ethans arrival and as the hours ticked along it was starting to feel more and more like the day he arrived.
Around lunch time one of the FMU Dr’s popped his head in and couldn’t believe I still hadn’t been called. He had already spoken to theatres several times telling them to get a wriggle on...finally his last call sunk in and around 1pm they called to say they were ready for me.
So off to theatres we went, nervous as anything. It is like the first time you go you are nervous of the unknown then the second time it is ok because you have been there before but the third time OMG I was probably more nervous than before the first c/s.
Went into the theatre, hopped onto the bed in readiness for the spinal/epidural. All went well with that until everyone realised that the spinal did not work. Not one little bit, thankfully they had done a combined block with an epidural in ready to use. So they put a dose of that in....nothing! Put another lot in.....nothing! They tried a final dose...I was in tears because no one wants to be asleep for their c/s if they can avoid it and I know the anaesthetist felt bad for me too. So they put in the third lot and said they would just give it a bit of time to work...and YAY finally my legs were going tingly and numb. Tested it out several times with ice and I couldn’t feel a thing. So they went ahead....
Not sure how long it all took, Allan said it took them almost an hour to just do the spinal/epidural. But then suddenly there was all that pushing which you know mean baby is almost here and the next thing we heard that little tiny cry....bliss!!!
They were cleaning Riley up and then took Allan over for some photos etc. He was also able to cut the cord and one of my friends who works in NICU was able to come down and help too, so I knew she was in great hands. They whipped this tiny little baby over to me...she was so cute and seemed so small. Then back to their area she went. The next thing the Dr pops back to tell me that she stopped breathing but it is ok because that is a thing that 33-34 weekers will do. They gave her some breaths and she was doing well. They stabilised her and took her off to NICU, Allan followed along. I was stitched up and taken to recovery. Funnily enough it seems that my spinal finally kicked in right at the end and it took ages for me to be cleared out of recovery due to the level of the block!
Riley went right to level 3 and bed 1 in NICU. They put her on CPAP right away. I can’t remember the numbers but I know at some stage it was at 30%. She also got a cannula and a UV and a UA line just in case she needed an exchange transfusion. She weighed in at 2305g, 42cm long and a head circ of 32.5. I have no idea of her APGAR scores or anything like that.
I was taken up later on in my bed to see her, have never felt more in the way in my life! But she was looking ok and I really think I just needed to see that for myself. When I got to see her she was having a blood transfusion because she was anaemic again but her SBR was good and that is what I was really worried about.
I am sure that there is heaps I have missed and will remember further down the track...probably doesn’t help trying to write this being surrounded by babies who cry all night long!

Arrival Day

Today is the day we will meet our littlest princess!

Feeling are all over the place. I am excited, nervous, scared and anything else in between. Am very glad that we have made it this far....from things going down hill so early each and every day that she has been able to stay inside has been a blessing and now being so close to 34 weeks we know she is better off being cared for on the outside. So much safer!

It's offical

We are having a baby tomorrow...hopefully sometime between 8.30am and 9.30am.

I am being admitted tonight and am on the list for the c/s tomorrow. Had another lot of steroids and NICU have a bed waiting for our little Princess.

IUT #2 28/8/2009

Things certainly didn't go as smoothly as the first IUT. To start off little miss was laying right against the placenta and the cord making it quite difficult to get a needle in. Dr had to make 2 attempts, the first just missed and was sitting in the fluid rather than in the vein. Second attempt it worked perfectly

Unfortunately for me i could feel everything! The fab cocktail of drugs from 2 weeks earlier did not work at all this time. Some people say it is like an amnio, i disagree! Much more painful than an amnio and the IUT took over 40 minutes to be complete...with tightenings etc

First lot of her blood drawn cam back with a Hb of 70 (previous Hb prior to the IUT was 79) and a hematocrit of 21.

Working out all the math they came to the conclusion she could have 130ml of blood but my Dr didn't think they would get that much in.

They managed to get 100ml in before her cord pressures started going up at which point he stopped. Whilst waiting for the final blood results from the lab he decided enough was enough and stopped. Thankfully the blood that she got was good and done the job even though it was less. Her final Hb was 159 and her final Hematocrit was 46

I had managed to work up a bit of a sweat during it all, it was such a weird sort of pain...one midwife run off to find some cold compresses for me and help cool me down and the other Dr was worried and kept checking my pulse. I know at one point my BP got up to 158 or something....i am generally a 110-120 girl. I didn't catch the second number

There were 2 Chinese Dr's observing and lucky old me got to have my photo taken during it all LOL At least only people in china are going to see it

Up in birthing unit it took miss just over 4 hours to wake up this time. My Dr kept popping and and made sure the CTG was to stay on all night long....14 long long hours on it to be exact! But everyone was happy this morning so that is the main thing.

Down for a scan to check the site and check her dopplers. Everything looked good. He said he hopes we can get 3 weeks but i am to go back in just under 2 to check everything. He also wants to give me phenobarbital to help develop her liver enzymes. It helps them to break down the jaundice more efficiently once they are born rather than waiting for their liver to mature. He is chasing up the bili levels because he got 2 number...1 that seemed right - only gone up a bit and another that was sky high...so he is trying to find out what the result is and will chase up NICU about giving the phenobarbital based on the results...seems like they have to say yes as well

Oh and my blood weren't a typo my d-quant (which is the more accurate reading) was 230!!! I seriously didn't know it could go so high - mine got to 18 when Ethan was born but now it is going hyper!

Back on the 7th when my Dr will be away LOL Lets see if we have a baby that week! Or i have to go back as soon as i notice a change in her movements

IUT #1 11 August 2009

Finally out of my drug induced haze!

Yesterdays transfusion itself went really well. She was definitely anaemic and needed it. Dr was very pleased he was able to get a line into the umbilical cord rather than into a vessel that she wont use after she is born.

Night on the CTG...omg that was tough! A)I am not a back sleeper and of course you have to stay on your back to get good contact on a little person. B) it was birthing unit Some of those women are LOUD...one went on for over 2 hours!!! and C) Missy wanted to play catch me if you can so of course it alarmed all night long and i got probably 1 hours sleep!

Had my follow up scan this morning - basically give my Dr a baseline for post transfusion dopplers (even though they arent reliable) and to check the site where he put the needle in. Everything looked fine. No worries about prom because he didnt even need to go into the sac...right through the placenta in the the cord.

Sadly it looks like we will be back for another in a week or 2 - most probably a week. My antibodies them selves have taken off like a wildfire and that was before he stuck the big old needle right through the placenta. So in thinking i will be 30 weeks next week and he probably wouldn't even transfuse after 32 weeks we have roughly 2 weeks to go - if things carry on as he expects!

So it was a bit of a mixed bag but the transfusion went well and she is still baking away.

FWIW, on Monday her estimated weight was 1475g

This pic was meant to show the excellent trace after the IUT...think i need to figure out the camera on the laptop ;-)



And a lovely (not) fat pregnant and tired pic (well i guess i could say under the influence of drugs too)

What is an intrauterine transfusion

It is as scary as it may sound. Basically it is an unborn baby having a blood transfusion prior to birth. This is done only when needed, a baby must show signs of severe anaemia before an IUT will be performed as there are many risks and even though the benefits far outweigh the risks no one wants to risk the health of a baby who isn't ill.

The follow are the answers to some of the questions i have been asked since having my IUT, hopefully these answers will help some people understand a little bit better and also give some insight to anyone who may be facing an IUT.

Is it like an amnio?
For me the only thing similar to it being like an amnio is that there was a big old needle going through my pregnant tummy. Unlike an amnio the needle did not go into the amniotic fluid, instead it went through the placenta into the umbilical cord.

Did it hurt
The first one did not hurt, i was given a cocktail of drugs to sedate me prior to the procedure. I was given a combination of pethidine, temazepan, phenergan and something else i cant remember the name of. I was also given a drug to prevent uterine contractions and prior to the big needle going in i was given a local anaesthetic into my tummy as well. The first IUT i was blissfully unaware of it all, i basically closed my eyes and relaxed.

The second one was a different story. I had the exact same drugs and i felt every little bit of the procedure. My Dr said that it was probably due to anxiety that they didnt work. But yes in that instance it was very painful. My blood pressure shot up and i was covered in sweat.

Did the baby move?
No, once they positioned the needle and drew out some of her blood to test her Hb and a few other things Riley was given a sedative called pancuronium. This generally keeps the baby asleep for around 3-4 hours. That is a very scary time because you do not feel anything, the usual reassuring kicks are no longer there and all you can do is watch the CTG machine to know that all is ok in there.


Now to put it all together. You are sedated and the needle is guided into position via ultrasound, the ultrasound continues for the entire procedure. A small amount of fetal blood is taken to check the fetal Hb etc. The pathology lab is on standby for the bloods as the results need to be relayed back ASAP. At this stage the baby is given its sedative. Blood is slowly transfused into the baby, all the time both the Dr and his assistant are watching to make sure the blood is going into the right place. Apparently you can see little bubbles as it goes in, i chose not to look at the u/s screen. The babys heart rate is constantly monitored for any significant changes and the pressure in the cord is also monitored. If at any stage the baby shows signs that he/she isnt happy the procedure is stopped and if need baby the baby will be delivered by emergency c/s. Although most babys do pick back up if the amount of blood transfused at a time is reduced or the needle is removed. Riley at one stage during the second IUT was not happy so the transfusion was slowed down and the amount each time was reduced.

At the end of the procedure, they take another small amount of blood from the baby to make sure that the RBC have gone to the right place and so they have a final Hb and crit level for the baby. All going well, these should now be back into a more normal range. The new levels can also help the Dr's predict when they may need to repeat the procedure.

According to the text books, an IUT is meant to last for anywhere between 2-4 weeks depending on how aggressive the antibodies are. My antibodies were very aggressive, giving us just 2 weeks exactly between transfusions.

I think i may have covered everything, i hope i have but please feel free to post if you have any further questions and if i think of anything else to add i will be sure to update this post

August 3 2009 - 28 weeks

Well where do i start

Had yet another scan today - we got some very high readings and some high but not over the transfuse line readings. At first my Dr thought that we would be doing a transfusion but with the second lot of numbers all being consistent we are going back on Wednesday for another scan and another CTG. I am having CTG's with every scan now.

He said it is no longer a case of if we will do a transfusion but more of a when will we do it. He doesn't want to go in and find out she isn't as anaemic as we think.

My placenta basically is covering the front of my uterus, making it hard to do anything. He would do an amnio but doesn't want to go through the placenta because that can set everything off and make the antibodies go crazy - Wednesday might be a different story as he said he may try it with me laying right over on my side.

He was tossing up weather to give me steroids today but doesn't want to because for a week after them my dopplers are no use to him because they make them unreliable. So steroids will be done when they really really have to be.

So if we do go down that path, i will be in hospital at least overnight. They do some serious monitoring and if at any time during the transfusion or after it if she isn't looking too happy they will deliver her - now that really scares me!

30/07/2009 - Scan Day again

Yet another scan today. It seems she is riding the line of transfuse or not transfuse now. I had to have a baseline CTG done today, because i was scanned and there were no signs of severe anaemia it was a good idea to get a baseline in case i have any worries about movement etc etc.

She has turned back from frank breech yesterday to head down bum up.

So we are back again on Monday to see how she is going.

It was such a relief to see similar number to the other day

A rushed 3/4D scan

With things looking like they are going up in the anaemia department we decided it was time to hurry up and get our 3/4D scan done. I had been planning on booking it but had not got around to it but its time to hurry up.

So here she is at 27 weeks. And yes we confirmed again that she is indeed a she!









I have tried to embed the video but it wont work! So here is a clickable thumbnail :-)

And so the journey begins

I think the pics say it all, today we found out we were expecting another little bundle...this will be our 7th child!

Very much a surprise but as always a very welcome little person. Having said that, of course as of today the instant worry has set in!!!

Rhesus Disease....

This is something that constantly bugs me. I know people do not understand Rhesus Disease, mostly because they don't know much about it or have never heard of it. It is the people who profess to know all about it that actually know nothing, or very little.

The most basic explanation I can give for Rhesus Disease is this....my blood has formed antibodies against anything that is Rh+, this includes our baby. My blood sees it as something foreign and immediately tried to get rid of it, killing the red blood cells is its way of doing it. So to put it bluntly, my body was trying to kill off our unborn child.

A pregnancy complicated by Rhesus Disease is more than just a few extra ultrasounds. Yes sure you do get more ultrasounds but there is no joy in each of these scans. They are for a purpose, they are to see if the baby is anaemic or showing any signs of anaemia. I know for myself, I knew exactly what number the middle cerebral doppler results had to be at. I know I want excited, I was filled with worry, with the what ifs, with the knowledge that our little baby could be very sick at each and every scan.

I guess I should also point out that Rhesus Disease is purely not being pregnant with Rh- blood. Being Rh- on its own is no issue but it seems that people think that because they are Rh- they have Rhesus Disease. Or that because you have had the Anti-D (Rhogam) injection that you have had Rhesus Disease and been treated for it. Quite simply you can not treat Rhesus Disease, after you have formed the antibodies no amount of anti-d will get rid of them. The anti-d injection is to prevent it, unfortunately like almost everything in life there is no 100%. It works the majority of the time but not all the time. Saying to a Mum with Rhesus Disease that you should just have the anti-d or that you should have had the anti-d and not understanding why they didn't have it...take a step back and think. They most probably did have it but it didn't work!

Another thing that bugs me is people telling others than an intrauterine transfusion is nothing more than a normal transfusion, just done like an amnio. It is a lot more serious than just a blood transfusion, the fact you are giving blood to an unborn child who is sick makes it a bit more serious than that. We had to endure 2 IUT this pregnancy with Riley. The first was at 29 weeks, although they can be done from as early at 18/19 weeks in some centers (even earlier in others I believe), the second was at 31 weeks. I will talk more in-depth about them later on but having a big needle put through your tummy, through the placenta into the umbilical vein to give your baby both a sedative and donor blood is a bit more serious than an amnio. The risks are high but the risk of losing your baby to anaemia or hydrops is much higher.

Well that is my little rant. I hope that this has explained the whole Rh thing to you if you had no idea and if you are someone who talks about it like you know all about it, I hope that this has given you some facts and truths to talk about rather than downplaying the severity of this horrible pregnancy complication.