An unexpected surprise
Posted 2 January 2014 by Jenelle
"This post is quite late as the past few weeks have been a whirlwind, but Josephine Martha arrived a little earlier than expected!
She was born on December 12, 2013 at 1.49pm. With lots of kisses, hugs and so many repeats of “We love you Josephine!” she became a saint in heaven at 3:11pm, while Bill was cuddling her.
Josephine’s beautiful button nose, fine lips and oh-so-perfect skin were out of this world. She was the image of her daddy! She not only inherited Bill’s facial features, but she had his broad shoulders and chest as well! From me, she had my long legs, wonky toes, long fingers and her nails were perfectly shaped.
I cannot explain how exciting it was to meet her. This little girl, who from day one, has been the centre of attention, deserved and got the best of everything we could give. From the time we found out we were expecting her, through the whole 31 weeks and 4 days and even after she passed away. She demanded our all and it was our pleasure to be there for her along the way. When we got her diagnosis, our focus on providing the best we could for her didn’t change. We just had to ensure she continued to be treated with the dignity that she deserved.
It is truly an honor for us to be her parents.
There is so much to share about Josephine’s amazing life and how she has changed us (and so many others) forever. In the meantime, I just miss her kicks and tumbles so much. It is hard getting used to not feeling them anymore."
Josephine Martha – Ora Pro Nobis!
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Sharing life with Josephine
Posted on 29 October 2013 by Jenelle
"WOW – the past few months have been a whirlwind and the love for Josephine across the world is growing as fast as she is. All things considering, Bill and I are doing ok. Some days are harder than others but all-in=all, once the shock subsided and since we had our first meeting at New York Presbyterian, everything has been as good as it could be (considering the circumstances).
As a little girl, she would no doubt love this attention. I said to Bill as we walked in the door the other night, I already know her temperament. She is cheeky! SO cheeky, and I know, if we were able to see her grow up, she’d be the kind of girl to look straight at us with her big eyes, wearing a little dress with ankle socks that had lace around the edges and say “I’m sorryyyyyyy!” and get away with whatever she had done. Kind of like her mummy. At the moment, she is moving a lot. The moment I lay on my left side, she kicks, almost without fail. If I try to lay on my back she starts up again. She loves it when I sleep on my right side so now, that is what I do, even though it means I cannot spend a long time facing Bill to chat with him. Now, almost every day between 3 and 3.30pm she begins to play for about an hour, before settling in and getting cozy for the commute home. Once we have had dinner she starts playing again for another couple of hours and tumbles and turns and then is quiet through the night (unless I lay in a position she doesn’t like). Cold Milo sends her bananas without fail! Every movement and flutter is like a huge milestone for us. We couldn’t imagine life without these experiences!
We have done some amazing things with Joey. So far as we have tried to make her the central part of so much that we have done. We just mention her anytime we are doing something special beyond our every day life, so that we are acknowledging that she is also sharing this moment with us.
Just as a start she has –
- Been to her first State Fair (GO MINNESOTA!)
- Walked along the Mississippi River
- Visited Mall of America.
- Took a little drive into Wisconsin
- Went to Saratoga Springs and Albany
- Eaten at a place that was seen on Diners, Drive Ins and Dives (the JUCY LUCY BURGER!!!)
- Spent the morning with me while I became American.
- Stayed up all night to watch Collingwood thrash Essendon
- Visited one of my favorite shops – the Cross Eyed Owl in Kinderhook! Here we are with our niece Emily
She really is experiencing her mummy and daddy’s love of travel. I also recently went back to Melbourne for a whirlwind visit.
While I was there she got to ‘watch’ the Grand Final and put up with the Cleary’s all yelling at the TV and at the umpiring. As well as the footy, she flew over Sydney Harbor, ate party pies, dim sims, crumpets, fish and chips and loved mum’s toasted sandwiches and drank lots of Solo Lemon and Schweppes Raspberry.
She took her first trip on a Melbourne tram, got delayed by Metro trains and hung out at the State Library.
She got to meet Shannyn and Ken, Nadine, Kayla and James, Ev, Mark, Harlan and Uncle Bruce. She got to spend lots of time with her Uncle Matthew and Leah and Holly and mum and dad spoiled us like CRAZY. In addition to this, she also had LOTS of visitors. We surprised Nana, Michael at Kays an Chris’ and Jayne and Lorraine – who all had no idea that I was visiting.
She also went to her first Diesel gig and for a drive on City Link. I got Maccas Drive Thru at 11.30pm so she could get an idea of what her mummy used to do all the time before Josephine became Josephine.
Mum and I went to Northland and Joey experienced a Wendy’s hot dog and milkshake outside Woolworths. She got to see bogans hanging out in the food court and we even went to Priceline for old-times sake.
We also got a 4D ultrasound done in Melbourne – across from the MCG on Grand Final Day!! Even though it was very early for a 4D, we saw something amazing. She looks like BILL and she sucks her thumb JUST LIKE BILL DID!!!
Josephine sucking her thumb
Prayerfully, all of our Queen of All Saints family are praying for her and for us. We have the FCJ’s in Australia praying for her, family praying for her and strangers praying for her – all over the world. When I pray for Josephine, amongst other things, I pray that she is comfortable and cozy, that she knows we love her and that she knows how much we can’t wait to give her kisses and hugs.
Medically, everything is chugging along nicely. We have found out that everything else in her development is progressing like normal and it looks like she has no other medical issues aside from the ancencephaly. That was almost hard to hear. For me, it was almost like if there were other things wrong, it would seem almost easier to deal with. But knowing that a certain part of growth that happened so early in her life has caused all of this and is going to take her away from us. Her fate was sealed at around 24-25 days after conception and I can look back on those two days where I was getting up, getting on the subway, going to work and going home – not realizing what was even happening to her. The only other ‘medical’ thing that is affecting me is that from about week 14, I have had to deal with constant gagging. It is exhausting and embarrassing and is still happening. Sea Bands have been a great help and have got me through the past few weeks as I was desperate to try anything. Despite my bump growing bigger and now being six and a half months along, I still haven’t put on any weight, but neither my doctor nor myself are concerned as I have plenty to go around!
"Amongst other things, I pray that she is comfortable and cozy, that she knows we love her and that she knows how much we can't wait to giver her kisses and hugs."
Another thing is that we are also starting to plan her funeral. As Bill said to Father Joe, I am a liturgy nut, so obviously, I want the most beautiful Mass for her. I’ve read some people say they haven’t wanted to look into funerals beforehand but for me it is part of knowing that I have things done and I don’t want to forget anything or leave things to be rushed. That gives me peace of mind and gets me through all of this. I want her funeral to be a celebration of her time that we have got to know her while she lived in me. Her first flutter while I was standing in the kitchen, was like her first steps for us. Her going bananas after the cold glass of milo was like her first big temper tantrum. These are the little bits of Josephine that we celebrate and make memories out of."
She really is already part of our family!
Josephine at 19 weeks!
Josephine at 22 weeks!
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An angel in the making... we need your prayers
Posted 2 August 2013 by Jenelle
Please note – the first part of this blog post was drafted last week and the second part was drafted today. Please read the whole post.
"My blog presence has been pretty sleepy over the past few months – which is pretty much a reflection of how I have been. I have been sleeping lots and not feeling very well and struggling to get through work each day. BUT – with good reason!
Bill and I have been absolutely blessed beyond words. We are expecting a beautiful baby – due on February 9 next year! We are over the moon and so excited! Introducing – Baby Blevins – at 9 weeks!
The past couple of months have gone by in a blur of nausea and sleepiness. The best way I can describe it is – you know when you get off a dizzy ride at the Royal Show or State Fair? That bleugh feeling you have for a minute afterwards? That is how I’ve felt the whole time. Like I’ve been on a spinny ride after having eight hot dogs in a row. That non-stop seasickness feeling. I’ve been sleeping and sleeping and sleeping. My nausea is worse at night but over 4th July it ramped up and has since subsided. It has made working really uncomfortable and dealing with the various ‘New York smells’ I encounter on the way to work has been horrendous.
The crazy stuff has been my sense of smell. I can smell anything, anywhere. When we went to see Superman, a guy five rows away from us was eating a hot dog and it was like he was waving the frankfurt under my nose. Also, I’ve totally gone off vegetables. I cannot stand them and, don’t even miss them. Same with salads. Blah!
I just want to eat icy poles and oranges and tomatoes all day and I love McDonalds now even more than ever. So much that I actually spent an hour one night googling pictures of Quarter Pounders and have a great hi-res picture of one as my wallpaper. Since the 4th of July, the only meal I feel really fabulous after is Maccas. So I’ve had it a few times to enjoy in feeling ‘normal’ for just a little bit.
Also, since five weeks along, Bill has been giving me these horrendous progesterone injections and with constant blood tests, my needle phobia has been well and truly confronted and dealt with. Needles? No problems!
~ ~ ~
All the anticipation and excitement came to a head last Monday as I passed the 12-week mark. We had our Nuchal translucency ultrasound booked. Bill came along for his first time to view Baby Blevins in full action!
At first there was some kicking and showing off for the ultrasound but then there was a sleepy break where some tapping on my tummy got the turning happening again. Our sonogram technician was quiet but nothing seemed out of sorts as I was busy ohhing and ahhing at the screen. She went off to show the images to the doctor and I remained laying on the table waiting for them to come back.
The next fifteen minutes was a whirlwind. A doctor we never met walked in the room.
Our beautiful baby had a defect. No skull. No chance of viability after birth. Fatal condition.
Between wanting to smash her face in (she was terrible and I will not hold back on my feelings here) and laying there, naked from the waist down, the only thing I remember was curling into Bill’s shoulder with tears. And being adamant “This baby stays with us!”
She came back to tell us she had spoken to my obstetrician (who unlike her, is a fabulous doctor) and he would see us today and he would speak to us about arranging a termination. Oh really? I think I rolled my eyes at her between the sobs and going “What the hell is she talking about?”
We walked the halls back to the labor and delivery wing and waited. And waited. And googled and googled while we waited and waited. 2.5 hours later, still in scrubs, our Doctor was able to see us. After a warning from Bill, I let him say his piece while seeing the booking calendar on his monitor. No doubt to schedule a termination. I can see it now “Oh yes, let me just get out my phone and check iCal to make sure we don’t have a Fresh Direct delivery scheduled!” Sigh.
"She would go on her terms, not ours. We owed her that much.
We want to give her as much love as possible in the 2 minutes or 2 hours that she is with us."
In between more tears and after him explaining there was no hope and a termination can be arranged I asked him – “What would you say if I said I cannot do that?” He looked at Bill to help him out but Bill explained my position. He was compassionate as best as he could and explained that of course, this is not something that had to be decided today. I couldn’t blame him – he hasn’t known me long enough to how steadfast and stubborn I am and how there is hardly ever any ‘grey area’ for me. The concern was all about me and my health. In all my googling, I learned that carrying an anencephalic baby is no more harmful to a mother than a normal pregnancy. The baby grows pretty much normally in all aspects except for their tiny little brain and skull. For my own mental health and well-being, this baby had to stay with us for as long as she was meant to. I would have no part in deciding her fate. She would go on her terms, not ours. We owed her that much. We want to give her as much love as possible in the two minutes, or two hours, she is with us.
This pregnancy is going to progress exactly like a normal pregnancy. The only difference for us is, while we are still having a beautiful baby – we just won’t ever get the chance to bring her home.
Yes also, a "she". We think our bundle of joy is a little girl, as this diagnosis mainly affects girls. We had other names picked, but for this baby we have decided Josephine Martha (as we found out how special she was going to be on St Martha’s day on Monday). If it is a boy, he will be Joseph Martin. We were never going to find out the gender, but we will do so for Joey.
So far, we do know that this has just happened ‘just because’. All of my blood tests came back fine, all of the earlier scans were fine, I had been taking full levels of folic acid for over a year. This has nothing to do with my progesterone levels or anything and the chances of this happening again are still low with some extra Folic Acid treatment. Hopefully we will get more answers as the process goes on.
98% of babies are terminated after this diagnosis. Our Joey is already beyond special and now, even more so.
On Tuesday, we went to visit my normal doctor who squeezed us in during her lunch hour. She in herself, is amazing. Since this diagnosis, she has recommended a change of doctors and we agreed. Everything is different now and all of three of us need a different kind of care. Next Wednesday, we will be meeting with our new doctor and if she is even half as amazing as what I have read about her and her practice/neonatal hospice at Columbia Presbyterian, the next six months will be just as they were meant to be.
I know this decision to carry to term may not make sense to many of you. You may think we are being selfish or even stupid for prolonging this pain and grief. But it is nothing like that at all. I am calm and feel totally at ease. It is not easy, but is motherhood anyway? As our doctor said, we are parents now. We have a job to do and we are doing that job. Any normal pregnancy anxiety has disappeared which I think has also made a difference in how I am at the moment. Saying that, I am one person that cannot live with ANY regrets. Those who know me well, know how much I beat myself up for not staying in Melbourne for the replay of 2010 Grand Final. That was a football game. Could you imagine how I would be with even a tiny bit of regret for ending the life of this beautiful, kicking, spinning, strong heart beating baby? In all of my reading (and over the past few days I have done a lot of it) it is evident. Not ONE mother who decided to carry to term has regretted that choice. All two percent of us. We are going to be able to say goodbye – that is what we need. Not to suffer in silence while life goes on as normal on the outside, but shattered on the inside. Another article I read mentioned the sacrifice of all parents. You get up early, get to bed late, you clean their noses, you are up half the night, you feed them, you clean up vomit, you clean their scrapes with Dettol and wipe their tears. They are all sacrifices that parents make and what Bill and I are doing is just like that sacrifice. It doesn’t feel strange – it is what we have to do as a very new mummy and daddy
"Already she is being overloaded with love and that is as beautiful as her tiny little kicking feet.
The feet I cannot wait to pat dry after her bath and then tickle with my nose."
I know you will now probably search for information on this. The pictures can be distressing. Please know that a lot of them are extreme anencephaly cases. These babies are beautiful.
No doubt, this blog is going to turn into a whole lot of updates on Joey and us and the ups and downs of this time. There will be a lot of them. I hope you stay with us as we create a bucket load of memories and honor Joey as best as we can. Already, she is being overloaded with love and that is as beautiful as her tiny little kicking feet. The feet I cannot wait to pat dry after her bath and then tickle with my nose."
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ANENCEPHALY is a neural tube defect which means that the baby's skull and brain do not develop correctly in the womb. A recent study published in the British Journal of Obstetrics and Gynaecology found that 72% of babies with anencephaly lived for a short time after birth. Of those children, 25% lived up to 5 days, while up to 7% lived up to 28 days after birth.
Jacquier M, Klein A, Boltshauser E. 'Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly.' British Journal of Obstetrics and Gynaecology 2006; 113:951–953