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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.


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

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