About a month ago I attended my children's dance concert. It was a wonderful day seeing both Ella and Oliver perform as they both love to dance. They had the opportunity to dance in two concerts that day. The junior concert and the senior concert.
The junior concert features some very young dancers, some as young as 2-3 years of age. I still remember when we fist watched Ella dance on the stage at 2 years of age, it was gorgeous seeing her smile underneath the lights.
Ava would of turned 3 last year. She would of joined a dance class either last year or the year before and would of been performing at the concert. 3 years ago, seeing toddlers dance on stage would of had me all choked up trying to force back tears. I didn't cry this year and I was able to watch these tiny dancers with a smile on my face as they were incredibly cute. However, I think it is always going to be difficult seeing anything that could of been a milestone event for our little girl. The "what if's and "should of been" and "could of been" memories are always there driving a knife into my shattered heart.
Pregnancy loss is unfortunately common, that means that in that auditorium there would of been other parents watching dancers of all ages picturing their child centre stage and what the scene would of looked like.
My tiny dancer is dancing in heaven and I can't wait to see her dance!
Saturday, 5 January 2019
Wednesday, 3 October 2018
Thoughts for today...
It’s been awhile since I last blogged. This doesn’t mean I think about or talk about Ava Grace any less than I have in the past 3.5 years. Ava is constantly on my mind and also comes up in conversation a lot.
I was thinking today about Pregnancy and Infant loss awareness month which is October each year. It’s nice that attention and awareness can be given to this important topic but it also makes me wonder why there is still such taboo and such secrecy around pregnancy loss. What is it that makes people so uncomfortable to talk and acknowledge these little lives?
Why are people so uncomfortable talking about miscarriage, stillbirth, infant loss and termination for medical reasons? Why are people shut down when they try to speak their babies names? Why do people hide their pain? Why do people talk about their pain yet no one wants to listen? If someone loses a loved one in their later years and they talk about them, why is that seen as natural and something that others engage in? Is it because it is memories of a person who lived a long life? A baby that dies in the womb still created memories for their parents, they still have a story to tell, even though it may have been short. Some people say goodbye to their loved one holding their hand as they take their last breath or say their goodbyes once they are already gone. So why oh why is it wrong of bereaved parents to want to see and hold their baby after they are born sleeping or pass soon after?
Maybe in 100 years the conversation around baby loss will be completely different. Maybe bereaved parents will have their babies acknowledged daily. Maybe all babies will be legally recognised whether they hit the magic 20 week mark or not. Maybe all health professionals will have sufficient training to provide appropriate and compassionate care for bereaved parents and their precious babies.
Maybe our babies names will be spoken, written, heard and not forgotten.
I was thinking today about Pregnancy and Infant loss awareness month which is October each year. It’s nice that attention and awareness can be given to this important topic but it also makes me wonder why there is still such taboo and such secrecy around pregnancy loss. What is it that makes people so uncomfortable to talk and acknowledge these little lives?
Why are people so uncomfortable talking about miscarriage, stillbirth, infant loss and termination for medical reasons? Why are people shut down when they try to speak their babies names? Why do people hide their pain? Why do people talk about their pain yet no one wants to listen? If someone loses a loved one in their later years and they talk about them, why is that seen as natural and something that others engage in? Is it because it is memories of a person who lived a long life? A baby that dies in the womb still created memories for their parents, they still have a story to tell, even though it may have been short. Some people say goodbye to their loved one holding their hand as they take their last breath or say their goodbyes once they are already gone. So why oh why is it wrong of bereaved parents to want to see and hold their baby after they are born sleeping or pass soon after?
Maybe in 100 years the conversation around baby loss will be completely different. Maybe bereaved parents will have their babies acknowledged daily. Maybe all babies will be legally recognised whether they hit the magic 20 week mark or not. Maybe all health professionals will have sufficient training to provide appropriate and compassionate care for bereaved parents and their precious babies.
Maybe our babies names will be spoken, written, heard and not forgotten.
Saturday, 3 March 2018
Ava Grace No Footprint Too Small
Some of my readers will be aware that I started a volunteers group soon after Ava passed away to create baby clothes and keepsakes for other bereaved parents after being blessed with precious items to dress Ava in whilst in hospital.
I have posted the announcement below in the volunteers page today as I will be starting to collect again. If you are interested in joining us please follow the link. https://m.facebook.com/groups/1692090737678771
Important Announcement:
To all of you in this group who have in the past or want to in the future create tiny baby clothes and keepsakes I thank you for your patience while I took an extended break during my high risk pregnancy with our rainbow Jesse and focused on our family after his birth.
Ava's 3rd Birthday is coming up on the 16th March. I would like to start collecting donations of baby clothes, hats, nappies, booties, sleeping bags, bears and other special keepsakes after this date.
I will be focusing on collecting tiny baby clothes as quite often hospitals receive prem clothes but not clothes for the 12-24 weekers. If you do have something you have made or wanting to make that you are not sure about please feel free to message me. I am happy to receive blankets to donate but keep in mind I do't have alot of storage space so I am unable to take large quantities. There are patterns in the files section of this page but there are also many free patterns you can find on the internet. Some of the volunteers also modify bigger patterns. I myself make nappies and to make them small enough I took a larger pattern and shrunk it down on a photocopier to make it small enough for a 14 week old baby to wear. There is also a size chart that can help you when working out exactly what size to make it too. I also encourage you to look through photographs members have posted of the beautiful things they have created.
People often ask what is most needed, or most wanted by bereaved parents. I often say don't ever underestimate the power of a 3cm nappy! These are what I get the most feedback on from hospitals and bereaved parents themselves. You may ask why a nappy as a stillborn baby has no use for it. However, a nappy humanises that baby. It gives dignity to the baby. It shows the parents that someone else cares about their baby and sees their baby as someone just as precious as their living children.
Pastel colours are best, just as they are for full term babies. If you wouldn't use a particular fabric or wool for your living, fullterm baby then it would not be suitable for our tiny sleeping babies. These babies skin can be incredibly delicate so soft is best without fibres that can be rough or stick to their skin. Where possible if two of the same outfit/nappy/hat can be made that would be wonderful so that parents don't have the difficult decision of keeping their baby dressed or keeping their babies clothes as a keepsake.
Ava Grace was born at 15.3 weeks. She weighed 105grams and was 15.5cm in length. She had a head circumference of 10cm. She was tiny but fully formed right down to her fingertips and petite nose and ears. She was delicate, but more strong than many would believe. She was able to be dressed and undressed. She was dressed by my wonderful midwife in a spotted smocked dress/gown. She wore a pink beanie and a rainbow nappy. She also was given booties although these were a little big for her. The next day we placed her in her angel gown wrap in her nappy. We took the clothes she was wearing home except the nappy as we were given two the same so she could keep wearing hers and we kept one exactly the same. She was also wrapped in and gifted mini quilts and blankets. Every single piece that touched her is incredibly special to us and is displayed in our home with Ava's special things. Bereaved parents do not get to create many memories with their baby so any connection to them is so incredibly important and treasured!
If you have any questions please feel free to message me though this page. If you live nearby then I can arrange a time for you to drop off or myself pick up or I can give you my address to post your generous baby things to me. I package up these baby clothes and place a card with it too before it is sent on to bereaved parents.
In the past I have donated on behalf of this group to hospitals all around Australia aswell as a couple of hospitals overseas. Nepean Hospital (Penrith, NSW) has received the most as this hospital holds a special place in my heart as it is where Ava was born and died and the care I received from their staff was wonderful at such a sad time. I will continue to do this. If you have any contacts in hospitals or even know someone personally who is about to, or has experienced a loss and would welcome a donation of clothes and keepsakes, then please contact myself. Quite often hospitals do not have anything to give bereaved parents except an oversized blanket not in proportion to their size. Lets work together to change this so that no family experiences any more grief than what they already do.
Thankyou again for your support over the last 3 years. It means the world to me and my family. We love honouring Ava Grace and all babies who are gone too soon.
Erin Johnson
(Founder of Ava Grace No Footprint Too Small)
https://m.facebook.com/groups/1692090737678771
I have posted the announcement below in the volunteers page today as I will be starting to collect again. If you are interested in joining us please follow the link. https://m.facebook.com/groups/1692090737678771
Important Announcement:
Ava's 3rd Birthday is coming up on the 16th March. I would like to start collecting donations of baby clothes, hats, nappies, booties, sleeping bags, bears and other special keepsakes after this date.
I will be focusing on collecting tiny baby clothes as quite often hospitals receive prem clothes but not clothes for the 12-24 weekers. If you do have something you have made or wanting to make that you are not sure about please feel free to message me. I am happy to receive blankets to donate but keep in mind I do't have alot of storage space so I am unable to take large quantities. There are patterns in the files section of this page but there are also many free patterns you can find on the internet. Some of the volunteers also modify bigger patterns. I myself make nappies and to make them small enough I took a larger pattern and shrunk it down on a photocopier to make it small enough for a 14 week old baby to wear. There is also a size chart that can help you when working out exactly what size to make it too. I also encourage you to look through photographs members have posted of the beautiful things they have created.
People often ask what is most needed, or most wanted by bereaved parents. I often say don't ever underestimate the power of a 3cm nappy! These are what I get the most feedback on from hospitals and bereaved parents themselves. You may ask why a nappy as a stillborn baby has no use for it. However, a nappy humanises that baby. It gives dignity to the baby. It shows the parents that someone else cares about their baby and sees their baby as someone just as precious as their living children.
Pastel colours are best, just as they are for full term babies. If you wouldn't use a particular fabric or wool for your living, fullterm baby then it would not be suitable for our tiny sleeping babies. These babies skin can be incredibly delicate so soft is best without fibres that can be rough or stick to their skin. Where possible if two of the same outfit/nappy/hat can be made that would be wonderful so that parents don't have the difficult decision of keeping their baby dressed or keeping their babies clothes as a keepsake.
Ava Grace was born at 15.3 weeks. She weighed 105grams and was 15.5cm in length. She had a head circumference of 10cm. She was tiny but fully formed right down to her fingertips and petite nose and ears. She was delicate, but more strong than many would believe. She was able to be dressed and undressed. She was dressed by my wonderful midwife in a spotted smocked dress/gown. She wore a pink beanie and a rainbow nappy. She also was given booties although these were a little big for her. The next day we placed her in her angel gown wrap in her nappy. We took the clothes she was wearing home except the nappy as we were given two the same so she could keep wearing hers and we kept one exactly the same. She was also wrapped in and gifted mini quilts and blankets. Every single piece that touched her is incredibly special to us and is displayed in our home with Ava's special things. Bereaved parents do not get to create many memories with their baby so any connection to them is so incredibly important and treasured!
If you have any questions please feel free to message me though this page. If you live nearby then I can arrange a time for you to drop off or myself pick up or I can give you my address to post your generous baby things to me. I package up these baby clothes and place a card with it too before it is sent on to bereaved parents.
In the past I have donated on behalf of this group to hospitals all around Australia aswell as a couple of hospitals overseas. Nepean Hospital (Penrith, NSW) has received the most as this hospital holds a special place in my heart as it is where Ava was born and died and the care I received from their staff was wonderful at such a sad time. I will continue to do this. If you have any contacts in hospitals or even know someone personally who is about to, or has experienced a loss and would welcome a donation of clothes and keepsakes, then please contact myself. Quite often hospitals do not have anything to give bereaved parents except an oversized blanket not in proportion to their size. Lets work together to change this so that no family experiences any more grief than what they already do.
Thankyou again for your support over the last 3 years. It means the world to me and my family. We love honouring Ava Grace and all babies who are gone too soon.
Erin Johnson
(Founder of Ava Grace No Footprint Too Small)
https://m.facebook.com/groups/1692090737678771
Thursday, 1 March 2018
154 weeks and 3 days
154 weeks and 3 days since we said hello and goodbye... it was March 2015 where Ava’s condition went downhill rapidly. We were having scans weekly, twice weekly and then then daily and every day the cystic hygroma was taking over more of her tiny body.
I hate March it has so many painful memories that I want to forget... but then that would mean forgetting her... and I can’t. Those were the days she was still alive, barely, while her lungs filled with fluid and her organs started to show stress and her body distorted by her vascular and lymphatic systems failing.
I have ultrasound videos of her, one of which was offered by the private ultrasound clinic when they knew she was dying but I can’t seem to make myself watch them. I know I really wanted them at the time. She was waving to us in one of them. I remember so vividly sitting in a specialists office begging them to give us some sort of hope. I remember going around in circles asking and being told the same thing. Hopelessness is a horrible place to be in when you are usually a very positive person.
I wish I could of somehow protected my older kids from the pain of loss, of their baby sister.
March is so excruciating for so many reasons.
I’m not sure why her third birthday is giving me the emotions I’m feeling st the moment, I guess it’s just part of grief. The fact that life is moving further away from when we held her. Wanting to go back but also running from the pain.
I love her so deeply which means I miss her so deeply. I miss the feeling of her hand in mine.
15 days until Ava Grace is 3.
Wednesday, 18 October 2017
Update October 2017
Hi and thankyou for reading my blog. If you have found my blog because your baby has been diagnosed with a cystic hygroma/lymphatic malformation/vascular malformation or because your baby has passed away or if you are being faced with the biggest decision you will ever have to make I am so sorry to hear this.
I am two and a half years on from last holding Ava and I miss her just as much. Just because I am not blogging regularly, does not mean that I think of or miss Ava any less. The pain is still huge and some days I cant help but break down because I miss her so much and wish she was here running around as a toddler. My grief is not raw like it was 2 years ago but it is still deeply painful and has forever changed the person I was.
I have been on a break from my volunteer group Ava Grace No Footprint Too Small, however I have still been able to donate many boxes of sewn, knitted and crochet baby outfits and wraps to hospitals across Australia and also to individual families. The word is getting out about the quality of the baby things as I have had hospitals contact myself asking for more since I have originally sent out boxes to them.
I was able to attend the Pregnancy and Infant Loss Remembrance service at Nepean Hospital last week. This was a lovely service which honours all our babies gone too soon and also is a time I can connect with other bereaved parents and friends and the wonderful staff who looked after us at Nepean.
I was attending both the Bears of Hope and Pregnancy after loss support groups earlier in the year prior to having our latest addition Jesse and I hope to get back to it soon. Those support groups are what has got me to where I am in my grief and I know I am in a much better place because of the wonderful support Bears of Hope provide.
I have made some very close friends with others who I have got to know through the support groups and I treasure the times we meet to laugh and talk about ALL our children.
Having Jesse come into our family has meant I have been asked lots of times how many children I have (as often Ella is at school and Oliver preschool) or I am questioned why there is a big age gap between Jesse and the older two. These questions used to cause me to freeze. I used to dread being asked questions about how many children I have because I didn't want to leave Ava out but I also hated the awkwardness that can happen when I answer and tell them I have four children but only three are here with me. I am much better at answering questions about my family now but it still puts a tiny dagger into my sensitive heart and I still cant bear when you see people relax after they ask at what gestation she was born as if it doesn't matter so much because she was so tiny.
Having a baby means I venture into the baby clothes section often. This also means I am surrounded by pretty girls clothes. I try and avoid looking at anything that would fit Ava as it hurts (physically and emotionally!) It is hard not to imagine what Ava would look like as Jesse looks so much like Ella and Oliver and I know Ava would of too. Ava would of been old enough to do dancing this year and she would of been in her first dance concert with her older brother and sister this year which is hard not to think about. So I have learnt that the milestones (or lack of) still keep coming even when our babies have been gone for years. She is always on my mind just as my living children are. Having a rainbow baby has been very healing for my broken and shattered heart, but at the same time it makes you wonder would Ava have done that, worn that, liked that....
I still feel incredibly grateful for the time we spent with Ava and the place she now holds within our family. My children talk about her often in the most natural of ways which is really lovely to see.
Thankyou for everyones support and for reading this long and somewhat disjointed blog post!
Sincerely,
Ava's Mummy xxx
I am two and a half years on from last holding Ava and I miss her just as much. Just because I am not blogging regularly, does not mean that I think of or miss Ava any less. The pain is still huge and some days I cant help but break down because I miss her so much and wish she was here running around as a toddler. My grief is not raw like it was 2 years ago but it is still deeply painful and has forever changed the person I was.
I have been on a break from my volunteer group Ava Grace No Footprint Too Small, however I have still been able to donate many boxes of sewn, knitted and crochet baby outfits and wraps to hospitals across Australia and also to individual families. The word is getting out about the quality of the baby things as I have had hospitals contact myself asking for more since I have originally sent out boxes to them.
I was able to attend the Pregnancy and Infant Loss Remembrance service at Nepean Hospital last week. This was a lovely service which honours all our babies gone too soon and also is a time I can connect with other bereaved parents and friends and the wonderful staff who looked after us at Nepean.
I was attending both the Bears of Hope and Pregnancy after loss support groups earlier in the year prior to having our latest addition Jesse and I hope to get back to it soon. Those support groups are what has got me to where I am in my grief and I know I am in a much better place because of the wonderful support Bears of Hope provide.
I have made some very close friends with others who I have got to know through the support groups and I treasure the times we meet to laugh and talk about ALL our children.
Having Jesse come into our family has meant I have been asked lots of times how many children I have (as often Ella is at school and Oliver preschool) or I am questioned why there is a big age gap between Jesse and the older two. These questions used to cause me to freeze. I used to dread being asked questions about how many children I have because I didn't want to leave Ava out but I also hated the awkwardness that can happen when I answer and tell them I have four children but only three are here with me. I am much better at answering questions about my family now but it still puts a tiny dagger into my sensitive heart and I still cant bear when you see people relax after they ask at what gestation she was born as if it doesn't matter so much because she was so tiny.
Having a baby means I venture into the baby clothes section often. This also means I am surrounded by pretty girls clothes. I try and avoid looking at anything that would fit Ava as it hurts (physically and emotionally!) It is hard not to imagine what Ava would look like as Jesse looks so much like Ella and Oliver and I know Ava would of too. Ava would of been old enough to do dancing this year and she would of been in her first dance concert with her older brother and sister this year which is hard not to think about. So I have learnt that the milestones (or lack of) still keep coming even when our babies have been gone for years. She is always on my mind just as my living children are. Having a rainbow baby has been very healing for my broken and shattered heart, but at the same time it makes you wonder would Ava have done that, worn that, liked that....
I still feel incredibly grateful for the time we spent with Ava and the place she now holds within our family. My children talk about her often in the most natural of ways which is really lovely to see.
Thankyou for everyones support and for reading this long and somewhat disjointed blog post!
Sincerely,
Ava's Mummy xxx
Wednesday, 7 June 2017
Our Rainbow Baby
A baby born after loss is called a rainbow baby. This is because even though the storm may not be over the rainbow is a symbol of hope.
Our rainbow baby boy Jesse Lachlan was born Friday 12th May 2017 at 6:18pm.
Weight 3.48kg
Length 51cm
Name meaning: Jesse - gift from God, Lachlan - warrior (so meaningful)
He has completed our family even though there will always be a missing piece. One of the first things I noticed was that Jesse has dark hair. It may turn fair and be like his living siblings or he may have dark hair and take after myself. I had always wondered whether Ava would of had brown hair and looked like me and seeing Jesse made me think it would of been possible.
Having Jesse has brought some healing to our hearts and we are so grateful to have him in our arms after a very long and stressful journey through infertility treatments and then a pregnancy that early on looked like it was traveling the same path of our pregnancy with Ava.
We miss our Ava Grace just as much as ever and I wish I had her here running around getting into mischief just as toddlers do. In no way is Jesse replacing Ava but he has brought so much joy to our family and we thank God for our gift!
Thankyou to everyone who has prayed for us and encouraged us over the past 2 years.
We walked out of hospital on the 16th May 2017 with our arms full which was exactly 2 years and 2 months since losing Ava and walking out with empty arms.
. Please click the link below to be directed to my Ava Grace FB page.
https://www.facebook.com/permalink.php?story_fbid=799496410208276&id=456622537829000
Sunday, 19 February 2017
Traumatised - again
A rainbow baby pregnancy is always going to be scary. It is a mixture of complete joy mixed with fear. For those who decide to conceive again after loss you have hope that maybe things will turn out differently this time, surely it can't happen again. Unfortunately and heartbreakingly it DOES happen again, to those who have already lost before which just seems so incredibly cruel.
So with my little bundle of hope (mixed with fear) I had a few early ultrasounds. The first to check I didn't have an ectopic pregnancy (based on my history) then there was another ultrasound for the IVF clinic to confirm a heartbeat (we could see but not hear). Then another to hear the heartbeat. We saw the geneticist and genetic counsellor who said they weren't anticipating any issues or a repeat of what happened to Ava but because of how anxious I was and based on my history they recommended serial scanning from early on in the pregnancy and hopefully once I saw early on that there was not high nuchal fluid/cystic hygroma I would be able to relax (a little).
I saw my obstetrician who always does a quick ultrasound in his office at every appointment. It was genuinely nice to be back under the care of my obstetrician/gynecologist who I have now been seeing the last 10 years. All looked good on the ultrasound and of course I am on the look out for extra nuchal fluid, but it is too early to see it. A week later I am back and relieved to not see any extra fluid, but still aware its probably too early.
At 9 weeks and 5 days I am back at my Obstetricians office and he puts the ultrasound probe on me. As soon as the picture comes up on the screen it was immediately obvious what we both could see - a very defined spot of nuchal fluid. I wasn't even 10 weeks gestation. It wasn't even a nuchal translucency scan. I started to shake, cry, spit out words pleading with him to tell me it wasn't what I knew it was, but he knew as well as I did what we were seeing and he wouldn't ever lie to me, though at the same time was trying to calm me.
I had two stories that started in exactly the same way. One of them ended in the fullterm birth of a healthy baby girl Ella Georgia who is now 7 after a scary pregnancy. I also had a traumatic and devastating story of our tiny baby girl Ava Grace that was very fresh in my mind. As positive as I and others had been that Ava would be born healthy just as Ella was, that wasn't the case, so no amount of "thinking positive" would save this baby if their fate was already decided and their lymphatic and vascular system was just not going to develop.
TRAUMATISED ALL OVER AGAIN.
I felt like I was looking in on someone else's nightmare. This was my greatest fear. If I had been told something else was wrong I probably would have taken the news better than I did at hearing the same thing had happened again. Physically my body was under attack. I had been very well up until this point but suddenly had morning sickness rear its head and my blood pressure shot up causing horrible symptoms. My heart was constantly racing and I was nauseated constantly. I was on the verge of tears at all times and had nightmares and very disturbed sleep. I felt like I could faint at any moment which was really unpleasant and downright scary. As much as I felt incredibly close to the situation I also felt very distant, I guess as a way to try and protect myself of the pain that I new was very possibly coming.
I was unable to do anything with the Ava Grace No Footprint Too Small donations that were in Ava's room/spare room/sewing room/future baby's room. Looking at each knitted gown just made my mind go to a place of having to choose an outfit for this baby that I was carrying that I still didn't know would live or die. It was incredibly painful. Was Ava Grace No Footprint Too Small going to have a name change in the future to fit a siblings name?
There was nothing we could do but wait. So we waited and had more ultrasounds. I decided to get the genesyte test which tests for a few of the common chromosome issues - when you have absolutely no control over the situation just doing something felt better than doing nothing, and so I went for the blood test (which would also tell us the gender).
The bloodtest was marked as urgent but of course there were delays that had me on the phone to the company that collects the blood yelling down the phone like a crazy woman as it just added to my torture. We were supposed to get our results at an appointment with our obstetrician but this didn't happen because of the delays. This meant that I received a phone call the following day while I was by myself when I had really wanted my husband to be with me. The results were fine and this is when we found out we were having a sweet little boy. However I had no idea what this phone call would do to my built up emotions! I started crying uncontrollably and could not stop. I knew that this test was likely not to give us any answers, but it really hit me hard and I had to go home from work.
Finding out the gender was important for bonding for not only my husband and myself but our young children. When you lose a baby, the gender of your rainbow baby can become a much bigger issue than you ever thought imaginable. Of course all you want is to have a healthy baby but I am also going to be honest and share that finding out that we would never get another glimpse of what a baby daughter would look like was hard.
I have a really wonderful obstetrician who was happy for me to see him as often as possible and every time I do see him he does an ultrasound. Week after week the fluid kept increasing which just increased my anxiety. My blood pressure was high and I felt constantly sick and like I could not breathe properly. Stress does terrible things to your body! I was also having ultrasounds at a specialist ultrasound centre too where our baby and their organs were looked at very closely and measurements taken of fluid.
During this time I was in contact with the genetic counsellors who were very supportive and helpful to debrief and ask questions. I was offered CVS testing (again) and after talking it through, praying about it we declined having invasive testing again as it was very unlikely to show anything wrong, based on our history. So we waited.
We waited some more.
At an appointment with our obstetrician he said he thought the fluid was less. I couldnt allow myself to get my hopes up as I knew this was at an absolutely critical time for the lymphatic system to kick in. I knew from everything I had read and be told that 14 weeks was a crucial time. I had an ultrasound at the specialist centre a few days later which confirmed the fluid was now resolving!
Praise Jesus! This is what we needed to see and I had instant relief.
In saying all of this, it is important to remember that just because high nuchal fluid resolves it doesn't mean that you are having a healthy baby now. However it was looking more and more likely that our baby DID NOT have lymphatic vascular malformation like Ava did. High nuchal fluid that has resolved means that it was an indicator that something may be wrong. In our first daughter Ella's case there was nothing wrong and she was born healthy after a very stressful pregnancy filled with the unknown. In this babies case so far he was looking good but he needed to be closely watched so my frequent appointments became a little less frequent. An early and detailed morphology scan was done and then a follow up scan 4 weeks later was performed too. A cardiac scan is needed in these cases as high nuchal fluid can be an indicator of a heart defect (small or severe). Earlier on when the heart was being looked at it was leaning at more of an angle than it should have which had raised the question of him perhaps having something wrong with his heart.
I am very happy to say that the cardiac scan was done last week at 26 weeks gestation and his heart looked very good. He looks to be a healthy baby which was so lovely and reassuring to see.
We still have a few months until he is born, with more ultrasounds and checks to come but I now have more faith that we may be bringing home a healthy baby - this is something that just a few months ago I thought would not be happening, I thought we would be bringing home another tiny urn to sit with Ava's, another baby who had an unformed lymphatic system not compatible with life.
I am almost 27 weeks pregnant and soon into the third trimester. My obstetrician commented the other day that this seems like the longest pregnancy and I said I couldn't agree more. The anxiety associated with pregnancy after loss is not to be underestimated and is difficult to put into words.
I don't know why we have been faced with another difficult pregnancy which has had so many challenges so early on again. It just joins my long list of of "why" questions.
This little boy is so loved and really is a miracle in so many ways. I had a friend once tell me that we have fought hard for every single one of our children and all I can say is yes, we have fought for very one of them. They have all been worth it.
Early on in this pregnancy I found this song. I sang, cried, prayed and listened to this song over and over again and it certainly blessed me. The storm is not over yet but we are walking through it one minute, one day at a time.
Praise you in the storm - Casting Crowns
https://www.youtube.com/watch?v=L5bLvVjJ4MA
So with my little bundle of hope (mixed with fear) I had a few early ultrasounds. The first to check I didn't have an ectopic pregnancy (based on my history) then there was another ultrasound for the IVF clinic to confirm a heartbeat (we could see but not hear). Then another to hear the heartbeat. We saw the geneticist and genetic counsellor who said they weren't anticipating any issues or a repeat of what happened to Ava but because of how anxious I was and based on my history they recommended serial scanning from early on in the pregnancy and hopefully once I saw early on that there was not high nuchal fluid/cystic hygroma I would be able to relax (a little).
I saw my obstetrician who always does a quick ultrasound in his office at every appointment. It was genuinely nice to be back under the care of my obstetrician/gynecologist who I have now been seeing the last 10 years. All looked good on the ultrasound and of course I am on the look out for extra nuchal fluid, but it is too early to see it. A week later I am back and relieved to not see any extra fluid, but still aware its probably too early.
At 9 weeks and 5 days I am back at my Obstetricians office and he puts the ultrasound probe on me. As soon as the picture comes up on the screen it was immediately obvious what we both could see - a very defined spot of nuchal fluid. I wasn't even 10 weeks gestation. It wasn't even a nuchal translucency scan. I started to shake, cry, spit out words pleading with him to tell me it wasn't what I knew it was, but he knew as well as I did what we were seeing and he wouldn't ever lie to me, though at the same time was trying to calm me.
I had two stories that started in exactly the same way. One of them ended in the fullterm birth of a healthy baby girl Ella Georgia who is now 7 after a scary pregnancy. I also had a traumatic and devastating story of our tiny baby girl Ava Grace that was very fresh in my mind. As positive as I and others had been that Ava would be born healthy just as Ella was, that wasn't the case, so no amount of "thinking positive" would save this baby if their fate was already decided and their lymphatic and vascular system was just not going to develop.
TRAUMATISED ALL OVER AGAIN.
I felt like I was looking in on someone else's nightmare. This was my greatest fear. If I had been told something else was wrong I probably would have taken the news better than I did at hearing the same thing had happened again. Physically my body was under attack. I had been very well up until this point but suddenly had morning sickness rear its head and my blood pressure shot up causing horrible symptoms. My heart was constantly racing and I was nauseated constantly. I was on the verge of tears at all times and had nightmares and very disturbed sleep. I felt like I could faint at any moment which was really unpleasant and downright scary. As much as I felt incredibly close to the situation I also felt very distant, I guess as a way to try and protect myself of the pain that I new was very possibly coming.
I was unable to do anything with the Ava Grace No Footprint Too Small donations that were in Ava's room/spare room/sewing room/future baby's room. Looking at each knitted gown just made my mind go to a place of having to choose an outfit for this baby that I was carrying that I still didn't know would live or die. It was incredibly painful. Was Ava Grace No Footprint Too Small going to have a name change in the future to fit a siblings name?
There was nothing we could do but wait. So we waited and had more ultrasounds. I decided to get the genesyte test which tests for a few of the common chromosome issues - when you have absolutely no control over the situation just doing something felt better than doing nothing, and so I went for the blood test (which would also tell us the gender).
The bloodtest was marked as urgent but of course there were delays that had me on the phone to the company that collects the blood yelling down the phone like a crazy woman as it just added to my torture. We were supposed to get our results at an appointment with our obstetrician but this didn't happen because of the delays. This meant that I received a phone call the following day while I was by myself when I had really wanted my husband to be with me. The results were fine and this is when we found out we were having a sweet little boy. However I had no idea what this phone call would do to my built up emotions! I started crying uncontrollably and could not stop. I knew that this test was likely not to give us any answers, but it really hit me hard and I had to go home from work.
Finding out the gender was important for bonding for not only my husband and myself but our young children. When you lose a baby, the gender of your rainbow baby can become a much bigger issue than you ever thought imaginable. Of course all you want is to have a healthy baby but I am also going to be honest and share that finding out that we would never get another glimpse of what a baby daughter would look like was hard.
I have a really wonderful obstetrician who was happy for me to see him as often as possible and every time I do see him he does an ultrasound. Week after week the fluid kept increasing which just increased my anxiety. My blood pressure was high and I felt constantly sick and like I could not breathe properly. Stress does terrible things to your body! I was also having ultrasounds at a specialist ultrasound centre too where our baby and their organs were looked at very closely and measurements taken of fluid.
During this time I was in contact with the genetic counsellors who were very supportive and helpful to debrief and ask questions. I was offered CVS testing (again) and after talking it through, praying about it we declined having invasive testing again as it was very unlikely to show anything wrong, based on our history. So we waited.
We waited some more.
At an appointment with our obstetrician he said he thought the fluid was less. I couldnt allow myself to get my hopes up as I knew this was at an absolutely critical time for the lymphatic system to kick in. I knew from everything I had read and be told that 14 weeks was a crucial time. I had an ultrasound at the specialist centre a few days later which confirmed the fluid was now resolving!
Praise Jesus! This is what we needed to see and I had instant relief.
In saying all of this, it is important to remember that just because high nuchal fluid resolves it doesn't mean that you are having a healthy baby now. However it was looking more and more likely that our baby DID NOT have lymphatic vascular malformation like Ava did. High nuchal fluid that has resolved means that it was an indicator that something may be wrong. In our first daughter Ella's case there was nothing wrong and she was born healthy after a very stressful pregnancy filled with the unknown. In this babies case so far he was looking good but he needed to be closely watched so my frequent appointments became a little less frequent. An early and detailed morphology scan was done and then a follow up scan 4 weeks later was performed too. A cardiac scan is needed in these cases as high nuchal fluid can be an indicator of a heart defect (small or severe). Earlier on when the heart was being looked at it was leaning at more of an angle than it should have which had raised the question of him perhaps having something wrong with his heart.
I am very happy to say that the cardiac scan was done last week at 26 weeks gestation and his heart looked very good. He looks to be a healthy baby which was so lovely and reassuring to see.
We still have a few months until he is born, with more ultrasounds and checks to come but I now have more faith that we may be bringing home a healthy baby - this is something that just a few months ago I thought would not be happening, I thought we would be bringing home another tiny urn to sit with Ava's, another baby who had an unformed lymphatic system not compatible with life.
I am almost 27 weeks pregnant and soon into the third trimester. My obstetrician commented the other day that this seems like the longest pregnancy and I said I couldn't agree more. The anxiety associated with pregnancy after loss is not to be underestimated and is difficult to put into words.
I don't know why we have been faced with another difficult pregnancy which has had so many challenges so early on again. It just joins my long list of of "why" questions.
This little boy is so loved and really is a miracle in so many ways. I had a friend once tell me that we have fought hard for every single one of our children and all I can say is yes, we have fought for very one of them. They have all been worth it.
Early on in this pregnancy I found this song. I sang, cried, prayed and listened to this song over and over again and it certainly blessed me. The storm is not over yet but we are walking through it one minute, one day at a time.
Praise you in the storm - Casting Crowns
https://www.youtube.com/watch?v=L5bLvVjJ4MA
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