Bernadette

Tiernan made the funniest comment about breastfeeding. He saw me attemping to express and asked what I was doing. I explained that mummy’s boobies made very special milk for Arielle and I was trying to get it out. Considering his fascination with boobies we thought he would be quite intruiged. Cam then told him that when he was a baby he used to drink milk from mummy’s boobies - his comment - “Oh dad, that is disgusting”. He was mortified at the thought!

Today things are continuing to go really well. Arielle was really alert today and even managed to have a good breastfeed. We had a lovely kangaroo cuddle again. She had an apnoea episode and scared the life out of me. The machines beeped and flashed red (usually if he heart rate or oxygen rate lowers it just makes a soft alarm sound and flashes yellow) and the machine was showing she was not breathing. The nurse quickly picked her up with cold hands and that was enough to get her back into action. Apparently apnoea episodes are quite normal for premmies - they basically forget to breathe!! Very scary - I was so glad she was attached to monitors. Tiernan had also had apnoea episodes when he was a newborn and it is so scary.

 What a day we have had today. The day started out with the wonderful news that Arielle had put on 82 gms in 2 days so that she is now 1540 gms - not quite back to her birth weight but certainly getting there. She has also had an ultrasound of her head and all was perfectly fine. The paediatrician is extremely pleased with her. Then just as I was about to give up all hope on breastfeeding I managed to express a few drops of milk. The volume has not increased much however with each effort I am able to get out a few drops. the midwives have been just lovely and mix the ml or two I am getting with her formula for each feed and reassure me telling me that each little bit counts!! I also got to have a lovely 4 and 1/2 hour kangaroo cuddle. It was so lovely - the two of us slept for a lot of it and Arielle was very settled and comfy for the whole time. Then Cam came to visit and we got to spend some lovely time together. Then Tiernan came in to visit. He had the special job of giving the nurse the precious few drops I had expressed earlier and walked into the nursery telling the nurse he had special milk for Arielle. After seeing me have a kangaroo cuddle he wanted one too. He then took off his top and got to have a wonderful cuddle. All in all it was one of the best days I have had yet.

They have decided to keep me in here for as long as a bed is available so I am not sure now when I am going home.

Arielle is one week old today - wow what a week. Arielle is now out of the UV lights and off the oxygen so things are much better. After her initialy weight loss of 146 gm she has now put on 41 gm which is good. She is now on full feeds which is 21 mls per two hours. It is a special premmie baby formula. Most of the other bubs in the nursery are on breast milk however my body still has not got the idea that it was supposed to produce milk after having a baby. We are having one last ditch attempt with some drug assistance but I am quickly losing hope. Given that all hopes for breastfeeding are nearly gone I have decided to have chemo next Tuesday. No point delaying the inevitable now. I will probably be going home tomorrow. Although I am looking forward to time with my two boys who I have missed terribly, I am not looking forward to being separated from Arielle. We will still visit everyday but it wont be the same as being here and being able to go down each 4 hours for nappy changes or two hours for feeds.

 Here are some photos - the last one is of Tiernan with his little friend Emily negotiating using a wheelchair - I thought it was too cute!!  

Arielle’s oxygen saturation dropped last night so she had to have oxygen in her isolet today (23% oxygen). Her bilirubin levels were a little too high so she had to be under UV lights (her first suntan) today. Tiernan came to visit earlier in the day and Cam and I got to spend some very special time with Arielle tonight. Cam did her nappy change and then I had a kangaroo cuddle and an attempt at breastfeeding (she was too sleepy though). It was such a lovely time. When you have a premmie baby in special care every little moment of contact counts! I even had an afternoon sleep today and set my alarm so that I would wake up at 1.30pm to do her nappy change - any little bit of contact makes the world of difference. The breastfeeding still isn’t happening however the lactation consultant said not to give up just yet - my body still might come to the party!

Arielle continues to go really well. She is still the most gorgeous little baby girl (not that I am bias of course!). My body is letting me down and does not seem to have read the chapter on milk production. Arielle has the concept and is great at sucking away but my body has not got to producing anything yet so fingers crossed that will kick in soon. The paediatrician is very pleased with her progress and has even asked if there was any chance my dates were wrong as her behaviour and development is consistent with an older baby even though her size is consistent with a younger baby.

Arielle Jessica Martin was born at 6.45pm on Tuesday 22nd August 2006 at the Mater Mothers Hospital, Brisbane at 33 weeks gestation.

Weight - 1563 gms (3 pounds 7 ounces)

Length - 41 cm

Head Circumference - 30 cm

She has amazed everyone as not only did she breathe on her own when she was born but she has not required any breathing assistance since. She spent one night in the Neonatal Intensive Care Unit and has since been transferred to the Special Care Nursery. She is currently in an isolet which is a temperature controlled crib. Her only problem is her lack of body fat. She will have to remain in hospital until her weight passes 2kg. She has a drip in with a Dextrose (sugar) solution for nutrition and she has just started formula feeds today - 2 mls per feed every 2 hours initially. If she tolerates this then she will be able to have more formula and have the drip removed. She had a few nuzzle feeds from me yesterday and hopefully these will progress into full breastfeeds which I will be able to continue until chemo resumes. She has had blood tests done and she is totally normal which hopefully means the chemo did not pass through to her very much.

Tiernan met Arielle yesterday and it was the most precious moment you could imagine. I have never seen Tiernan looking so happy and proud. He told everyone he saw that Arielle was his little sister and how much he loved her. Seeing him meet her was one of the happiest moments of my life!

I am recovering well from the caesar however still in a considerable amount of pain. The next pain management option is a morphine injection and I am not sure if that is worse than putting up with the pain itself!! Hopefully it will settle soon. The plan for me now is to get better and then chemo will resume (and breastfeeding will have to stop).

Hopefully every day or so I will be able to put an update about Arielle with some photos on the blogg - so please continue to check it if you would like to watch her progress.

Bernadette

It looks like the time has come for Arielle to make her way into our world. The ultrasound this week was not great (for those interested in the medical side her tummy circumference was on the 9^th percentile and her overall growth was on the 5^th percentile). Given that 10 days ago these two measurements were tummy 26^th percentile and overall growth 9^th percentile, the concern is that the placenta although showing normal blood flow, is not doing its job of passing enough nutrients through. If I were not on a chemotherapy regime then they would leave her in for another two weeks with very close (daily) monitoring. However given that I require the minimum break to chemotherapy and it was decided at this stage that chemotherapy could possibly pose a risk to both Arielle and I given current circumstances and therefore the decision was made by my doctors (obstetrician main decider with consults to haematologist and paediatrician) to take Arielle out by caesarean section at 6pm on Tuesday night. The decision comes as both a relief and a stress. The relief is that at least on the outside she can be very closely monitored 24 / 7 and will be given the right nutrients. Also once I recover they will do all of the proper tests on me that will enable them to properly treat the cancer be it with further chemotherapy (I am already on the strongest regime possible so the regime will not change) or perhaps now involve radiotherapy. I will also be able to have all of the side effect drugs to combat the nasty side of chemo and without being pregnant hopefully my body will cope a little better. The stress is obviously a baby being born at 33 weeks (primarily breathing problems, feeding problems, infection and brain haemorrhaging – all of which may be exasperated due to the chemo effects) and also the risk to my health of a c section over an induced birth which I would have been able to have had I got to 36 weeks (chemo changes some of my blood levels that increase risk of infection and bleeding out). She is also has a very low expected birth weight for a 33 week baby (approx 1.5 kg or 3 ½ pounds). 

Yesterday I started on steroid injections to develop her lungs. Cam and I also had a tour of the Neonatal Intensive Care Unit (NICU) where a NICU nurse took us through and explained all of the machines, tubes, tests and problems that occur in early premmies. We saw a baby that was 1.5kg and hooked up to all of the machines and in the tiniest nappies you have ever seen and although it was quite a shock and initially upsetting at least we are a little better prepared for when Arielle comes out. Without sounding awful the hospital visit actually made us realise just how lucky we were – there were babies in the NICU born under 1 kg (2 pounds) and whilst having my steroid injection another lady was having one and she was only 25 weeks. So considering what Arielle and I have gone through in the past 19 weeks she really is a miracle baby to get to 32 weeks and over 1 kg. And very importantly all of the doctors are well prepared and briefed on the case – I could not ask for a better medical team to be helping us get through this. 

We know that everyone will be thinking of us especially next week and in the coming weeks. All of your prayers and positive thoughts are very welcome and appreciated. She is likely to be in hospital until her due date (October 10) and will spend some time in NICU and then the Special Care Nursery (SCU) once she is stable and does not require breathing assistance. I do not know at this stage how long I will be in hospital – my reward for recovering from the birth is to start up the chemo again after missing round 10 this week and also to have a heap of new tests (great incentive there!!!). I suspect once my obstetrician releases me from the maternity ward my haematologist may admit me into the cancer ward to further speed recovery so that the cancer treatment can get underway again. So I am preparing myself for a longer than usual stay but hoping it will be sooner rather than later that I am let out. 

At the moment all of us are coping with the news but still struggling to come to terms with it all. Therefore we would really appreciate no phone calls at the moment. Whilst I am in hospital Cam will be looking after Tiernan (a few weeks ago he reduced his workload to help look after me so that he now only works the 2 days per week that Tiernan is in childcare). Again we would appreciate no phone calls at home until we are all back on our feet again as it will be quite tiring for to be running backward and forward from the hospital to see Arielle (and me initally) with and without Tiernan, hainvg more cancer tests and treatments and then doing the normal bed, bath routine each night in addition to the emotion stress that will be involved. Whilst in the NICU and SCU we are not allowed to use mobile phones – so I hope no-one minds this request but if possible please send us emails rather than calling for the next few weeks. We can read and reply when appropriate and also it is a lot easier to emotionally cope (I tend to break down on the phone lately). 

Tuesday night is going to be stressful and tiring to say the least. Mum and Dad will be at our house with Tiernan and once Arielle and I are up for it on Wednesday morning they will be bringing Tiernan in to see us. That will be our special family time when Tiernan gets to meet Arielle (he is so, so excited). We will get a text message or email out as soon as possible however given that until the day the decision will not be made as to whether I will be having a spinal block or a general anaesthetic (I pray not) for the birth we may not be up for anything on Tuesday night. So please don’t worry if you do not hear from us until Wednesday. 

Well that is the end of my long blogg today. I hope it explains everything for everyone and once again thankyou to everyone for all of your thoughts and prayers – I know that they are being heard and that Arielle and I are going to be well looked after.

The next time I post a blogg I will be a mummy again!! 

Well we had an ultrasound yesterday and it was a nerveracking few hours to say the least. During the ultrasound the sonographer was not saying much and then she got the doctor to do all of the measurements again. We asked the doctor if her growth looked alright and he said that he would need to check back against the references. So once it was all done we sat in the waiting room waiting for the results. The doctor then came out and told us that Arielle’s growth was sitting on the 8th percentile - not at all what we were expecting (last time she was on the 19th percentile and the time before that was 26th percentile). Under the 10th percentile is usually when they seriously consider taking baby out. The twist however was that her femur length (upper leg) was what was pulling the results down so low. It was only 5.14cm which was basically off the scale. My obstetrician consulted with a fetal medicine specialist and he said that sometimes the femur length can show as smaller than it actually is depending on baby’s position. Her other measurements such as head circumference and belly size were within the normal range (although still the smaller side of normal). Her weight was put at about 3 pounds which again was small for this stage but still within normal ranges. So the ultimate decision was that given I am only 31 weeks pregnant we are getting two weeks grace. Unless something goes wrong in between I will have another ultrasound on the 21st of August and the situation will be reviewed again then. If at any point her movements slow down again then I need to go to the hospital and they will trace her heartbeat. The good news was that she was showing signs of fetal breathing which means her lungs are getting ready to be able to breathe oxygen. That is a really good sign for only 31 weeks (but probably due to the particular steriods I have had since week 14 that are the same family of drugs given to pregnant women who go into early labour to develop the baby’s lungs). So we have been given two weeks grace and we will be keeping fingers tightly crossed (and my legs tightly crossed in case she has any ideas of deciding to come out early of her own accord) that her growth improves and she can stay in as close to term as possible.

Chemo went well - no dramas. I nearly managed to wangle my way into staying at home afterwards but unfortunately the doctor won out. Arielle slowed down a little in her movements so I am having an ultrasound on Monday (31 weeks) to see if her growth has slowed down. If it has then she will be coming out sooner rather than later as if her growth has slowed too much she stands a better chance on the outside. So keep fingers crossed for tomorrow and hopefully she will get to stay in longer than 31 weeks. That’s all for now.